Beside myself with worry, dread, fear.

[Coulddobetter]

Lost my dear, dear Mum last April to Alzheimer's, and I know that you all know what a dreadful 'journey' that is. I have grieved for her since diagnosis, and at each and every downturn in her illness, and of course, since her passing. Felt I was turning a corner after getting through a dismal Xmas and now this...

My wonderful partner who has been at my side, and at Mum's too, these past years, has had an urgent referral following a gastroscopy last Wed. We thought perhaps at worst an ulcer or hiatus hernia, but a growth was detected, biopsies taken then and there, urgent referral straight to GP, who made an urgent referral to the hospital, and certainly things are moving forward, we see a consultant and surgeon on Thurs.

But oh my, how blind have I been? He is a tall, strapping bloke and whilst he has lost weight these past weeks as he felt like he was having sensations like severe indigestion/heartburn, so was not finishing his meals, when I looked at him after the gastroscopy I could see a massive change in him. He looks so poorly, and diminished, and is very tired with no appetite, and seems for the first time ever, to be frail.

I think my grief over Mum has blinded me to his health issues, and that I have neglected him. I am trying so hard to be strong and positive around him since the shock of the gastroscopy findings, had a bit of a meltdown yesterday when I called 111, he did not want me to, but because his fluid and food intake is so little at the moment, it brought back issues I had experienced with Mum, and I panicked.
I feel 'on the edge' and am so scared of what this week will bring. I cannot bear it, but know that I must.

.

 

[Coulddobetter]

Met with my sister briefly for a coffee Saturday, thought it would be useful to talk to someone, kind of wish I hadn't as though supportive, she had seen my OH briefly day before gastroscopy, and was shocked at his weight loss, and there was a moment when outlining my worries, and forebodings she could not hold my gaze, as fleeting as this was, I found it very discomfiting, and wished I hadn't seen that look.

 

[margherita]

Hi, @Coulddobetter,
I am so sorry about what is happening to you. I am lost for words.
You are brave and I am sure you will find the strength to support your partner.
Please, do not feel guilty.
I send you a big ((((hug))))

 

[Coulddobetter]

Hi, @Coulddobetter,
I am so sorry about what is happening to you. I am lost for words.
You are brave and I am sure you will find the strength to support your partner.
Please, do not feel guilty.
I send you a big ((((hug))))

Thank you, I hope so.

 

[Grannie G]

Hello @Coulddobetter

It`s so easy not to notice changes in people we live with all the time, especially when you are slowly overcoming grief at the loss of your mum.

It`s similar to not noticing how our children grow.

Please don`t blame yourself. Your partner will now be having treatment and all we can hope is the treatment will be successful and you will be able to support him through his recovery.

 

[lis66]

Hi coulddobetter,sending you (((((hugs)))) how awful for you at the moment ,I know I have neglected my husband in the last few years with caring for my mum who has AD it isn't until something drastic happens that makes us sit up and take notice ,I totally agree with what you say you do greive from the moment they are diagnosed,on this horrundeous journey I hope you find strength to cope at this very hard time you are in my thoughts please keep us posted xxx

 

[Guzelle]

How sad for you but don’t blame yourself who can blame you for not noticing he wasn’t right while caring for someone with dementia which is more than enough for one person.

 

[Jale]

I think there are many times that we don't see things that are wrong, sadly that is just being human. Have no wise words to offer, but will be thinking of you and sending you some virtual hugs

 

[LynneMcV]

It is a terrible situation to find yourself in, but please don't beat yourself up thinking that you should have noticed things sooner.

As others have said, when we see a person every day we do not always see the gradual and often subtle changes - but those who see the person less regularly will notice things because there has been a longer time period for the changes to take place - and so they appear more obvious to them.

You have had so much to deal with, of course if is not down to any failure on your part.

The important thing is that the health issue has been picked up now. I am keeping you both in my thoughts and hope for a positive outcome.

 

[Coulddobetter]

It is a terrible situation to find yourself in, but please don't beat yourself up thinking that you should have noticed things sooner.

As others have said, when we see a person every day we do not always see the gradual and often subtle changes - but those who see the person less regularly will notice things because there has been a longer time period for the changes to take place - and so they appear more obvious to them.

You have had so much to deal with, of course if is not down to any failure on your part.

The important thing is that the health issue has been picked up now. I am keeping you both in my thoughts a. Itnd hope for a positive outcome.

Thank you to all of you for your kind, thoughtful comments.
My OH is cheerful enough, but I'm sure he is deeply worried, who wouldn't be.
My legs feel wobbly, and I have that awful, fluttery feeling in the pit of my stomach. Once Mum was diagnosed and AD confirmed as I suspected, I felt that I needed to be informed of what might lie ahead, and read quite widely. However, I am far too anxious and fearful just now to google any of the words used after the gastroscopy last Wed. and as this Thurs approaches part of me of course wants to know exactly what we are dealing with, and part of me does not want to know, if you know what I mean?

Have to say that looking back over the past few years since Mum's diagnosis and the physical and cognitive impact it had on her, left me very depleted and low, a kind of trauma I suppose. We were just starting to plan our future including booking our first holiday abroad for 6 years, next month, and we realise we may have to cancel.

I do feel I have given him less of my time, and focus, and I have said that to him a number of times in recent years, and of course he is now ,my sole focus. He has been an absolute rock for me. I just hope that the last few years have not adversely compromised his health.

Sorry, writing this with laptop on my knee, and cursor moved so may have deleted some words from the previous post inadvertently as a result. Apologies. Thank you all again.

 

[Cazzita]

Hope things improve for your partner and that you feel less guilty - you really have had a ton on your plate - as we all know being on here. Take care xx

 

[Coulddobetter]

Appreciate all the TP folk who have responded, thank you again. Positive thoughts and/or prayers from any and all comers of whatever creed would be very welcome ahead of tomorrow's hospital meeting. We might not know anything for definite tomorrow unless the histology report is back in time.

 

[charlie10]

Will be thinking of you and your husband tomorrow.....fingers crossed that all goes well. And please change your user name...'Coulddobetter' really doesn't do you justice....it should be 'Doingbrilliantly' or at least 'Doingmybest' .....you have to have positive thoughts too! take care x

 

[AliceA]

I agree with Charlie, keep positive. I myself am having treatment for the oesophagus. Methods and treatments have come on by leaps and bounds since my mother's time.
So hold on tho hope, focus on building up your husbands strength, fortify his diet with good but easy to digest meals.
It is so easy not the see gradual changes in people, especially when living together. Others have said this too.
This is a new challenge perhaps a new name is a good idea, your present one sounds as if you are judging yourself unfairly.
It must be a complete shock but you have acquired many skills since first joining TP. These will help you now.
My heart goes out to you, prayer for tomorrow but whatever the report says and it could be much better than you fear, you will cope, the human spirit is very strong and keeping positive does help. X

 

[Coulddobetter]

Results not good. Fears confirmed. More investigations need to be carried out.Will leave it there for the time being.

Thank you charlie10and AliceA, and everyone who has posted.

AliceA - it is oesophagul, it is encouraging to hear that you are getting treatment.

 

[charlie10]

so sorry to hear this.....my dad is on 6mth checkups for this, at 93 I don't think they would do anything anyway. I do hope that they can decide quickly on treatment so that you can start to look to the future....and do look after yourself for your own sake, as well as your husband......many hugs from overseas x

 

[AliceA]

Results not good. Fears confirmed. More investigations need to be carried out.Will leave it there for the time being.

Thank you charlie10and AliceA, and everyone who has posted.

AliceA - it is oesophagul, it is encouraging to hear that you are getting treatment.

It is not an easy path for anyone but let's hope your husband is at a treatable stage, I will have to have lifetime treatments but that is a small price to enable me to be able to care for my husband. You will have to adjust your lives to a different way of eating. Treatment is improving all the time, love and prayer..

 

[Grannie G]

I`m so sorry to hear this @Coulddobetter

Sometimes as one door closes another door closes too. When my mother died after having dementia for more than ten years, we had to deal with my husband`s dementia, so I know how devastated you will be feeling.

Please continue to post and take all the support Talking Point can offer.

 

[Coulddobetter]

I`m so sorry to hear this @Coulddobetter

Sometimes as one door closes another door closes too. When my mother died after having dementia for more than ten years, we had to deal with my husband`s dementia, so I know how devastated you will be feeling.

Please continue to post and take all the support Talking Point can offer.

So sorry to hear of your troubles Grannie G, how horrendous.

Have to try to keep my foot jambed in the door, as the alternative is utter despair, and that would be a terrible burden on him.
I am sure I will post again, have been more of a reader than a poster during Mum's illness, but for now, a lot to digest.

 

[Coulddobetter]

Just a quick vent.
As we await contact from the hospital, neighbours and well wishers, well intentioned as they all are, can at the same time be so insensitive, and sometimes prurient; some very close questioning from one on the same day we got the news; where is it? what's next? etc etc etc.
From another neighbour; 'Is he in bed permanently now?'
And from another by way of a pep talk 'Hope for the best, prepare for the worst'. And it seems everyone has a 'C' story they wish to impart, and are googling on our behalf.
It's doing my head in.
Plus OH volunteers a couple of days a week at a hospice, the irony, so more C stories emanating from that quarter too.

Don't remember getting this amount of unsolicited counsel after Mum was diagnosed with AD.