When life becomes untenable how can one kee... - Care Community

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When life becomes untenable how can one keep smiling.

secrets22
secrets22

After caring for my partner almost full time for more than 5 years who suffers vascular dementia and is totally bedbound,cannot walk or stand.

A week ago he was struggling to breath and his breathing was very laboured,so as advised by our GP I phoned the ambulance service and they duly arrived and took David into WSM hospital,and he was indeed in a very poor state,not eating or drinking and not talking and could barely open his eyes.

After a few days the physio woman saw me and said 'David is fit to come home' so you will need to collect him,and I said,'how on earth could I get him into a car let alone get him out the other end' ? She said,in that case we will get an ambulance ,which you must pay for.

On the day he was being discharged I phoned the hospital and said they could not send him home as he was so ill,and after a few hours an administrator phoned and told me he will be out today and if you dont have him home we will put him into another facility (a self funded care home)

David has now been home 3 days and I would say he is in a critical condition,and i'm not even sure he recognises me and to add insult to injury the Stand Hoist is not working and I phoned Mediquip and they said someone will come out ,I popped out yesterday to collect a prescription and just my luck they called while I was away,but they did leave another charger and that not working either,i have contacted them,but being a weekend I doubt they will come.

Today it was impossible to clean and change David properly,in fact,for the first time I broke down in tears,but I did my best.

I've had enough ,and I will not phone for an ambulance or a doctor again,life will take its course and thankfully David is not in pain,and the care lady who helps me 4 times a week says she cannot see how David can survive but for a few weeks at most.

Enjoy your life as best you can for non of us know how long we have.

21 Replies
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sassy59
sassy59Ambassador

How totally despairing secrets. What is the point in having doctors and hospitals when they fail to help?

You’re doing more than your best to help David but why was he sent home? You’re left alone and have the carer, that’s it. I’m dumbfounded and would be onto my GP and PALS telling them exactly what they need to know and more.

I honestly don’t know what else to say and truly feel for you both. Xxxxx

I’m so sad for you.

My friend is in a similar situation.her husband isn’t as ill as yours,but she can’t manage him as he is at present.

Luckily she’s a really strong character. Last week,they told her to take him home.pouring with rain- no wheelchair.

They said they’d help her . She replied what about the other end?

She walked out the n them .twice.i havent had contact with this week,as unwell myself.

You need to ring the Pals and say you want to put in an official complaint against 1 the service.

2 the person who was so awful to you.when the Pals say they don’t do written complaints,say that you need them to facilitate you making a complaint.

The ring the CAB,ask for help with the complaint and your right side

Is there a volunteer beareau near you who could collect your prescriptions,if you need them picking up.

Or perhaps they will know of a service who would sit with your husband while you had a short break,even a walk would perhaps help you.

Finally Mediquip. If your hoist still isn’t working,ring them up and if needs be,get upset- ry down the phone.

When Mediquip are coming to me.they text with an approximate time.

10 minutest before they are due,I get another text.

Please stay strong and look after yourself

God bless you. You have done your very best for your husband. X

Sorry to post again

I was thinking about you last night in bed.

Do you get any support from social services,whether you do or not I feel you need t contact them and shout help.

Ask for a careers assessment

If you don’t like the social worker or her attitude,stay strong,she’s just a means of you hopefully getting more support.make a list of your concerns/ problems.

Stay strong and be kind to yourself

Callendersgal
CallendersgalAdministrator

Hello secrets22,

What a sad and desperate post. It’s quite obvious that you are at the end of your tether with this endless struggle to get the help that you need.

I wish with all my heart that I could advise something that would help you effectively, but we all know, personally or anecdotally, how fractured services are right now and it’s almost impossible to suggest anything that would urgently make things better for you or David.

Please be assured that you are doing the best that you can in dire circumstances.

And I’d say just to try to continue doing that, no matter how much or little that is. It’s only when we no longer care that only doing little is a bad thing, and I know that you do, and are only desperate for help with the burden of Caring.

For emergency situations with David’s care, call on emergency services and don’t ever feel guilt-tripped into not doing that.

It might not always be the ideal solution but if that’s the only recourse you have for help, then of course you must do it.

Otherwise I can only hope that you can somehow find a reserve of strength within to get through this troublesome time.

Very best wishes to you both and I will hold you both, and your situation, in my heart and be thinking of you.

He'll Secrets

I am so sorry about all this. I know you have always done your best for David. I do think you need to let your GP know how David is now and see if they can find assistance. Take care x

Hello secrets22, so so sorry to read your post. I cannot add much to the other posts on here but just my heartfelt sympathy for your situation. Hope you can keep strong for the both of you. Hugs xxx

Hello secrets22. I don’t think you can keep smiling. You just soldier on.

Is WSM might be Weston General Hospital? The reason I ask is that I have a friend who lives in that area and whose husband was terminally ill. I was dismayed at the lack of support. Somerset health and social services were featured on a television documentary a few months ago and it was evident that there are problems.

The fact that your husband was medically fit for discharge does not mean that he should have been discharged. Safe discharge plan: nhs.uk/using-the-nhs/nhs-se...

More information here: carersuk.org/forum/support-...

Do you have support from the community medical and nursing services? I previously mentioned fast track CHC assessment. Did you ask about this? Possibly it could have been done while he was in hospital but you can ask your GP about it.

I am sorry that you are having such an awful time and hope that you can access support.

secrets22
secrets22 in reply to Bella395

Hello Bella and thankyou,yes you are correct,it is Weston General Hospital and it does indeed have a dreadful reputation.

we get no help from anyone ,and I have sent a letter to our GP expressing my dismay at the lack of support,and I am expecting him to contact me as our treatment has been appalling.

And it would be true to say my own health has suffered in battling bureaucracy on every level ,but its ok,my paramount concern is for David's wellbeing.

Bella395
Bella395 in reply to secrets22

People say look after yourself but it is virtually impossible when caring for someone who is so dependent. I am glad that you have written to the GP.

Just wondering if there are any carer organisations in your area who could help. Have you tried AgeUK or the Admiral nurses?

dementiauk.org/get-support/...

Oshgosh
Oshgosh in reply to Bella395

Alsosend th letter to the Pals dept oftbe Hospital

Hi secrets, I can't say any more than has already been said, but wanted you and David to know I'm thinking of you both and I hope you both get the help you both need, sending loads of love xxxx

Secrets22 - how are you? Please don't let your dismay with the hospital prevent you from seeking help. You cannot do this alone, not least because your husband will need palliative care, including medication. Even though he does not seem to be in pain, from what you say he needs treatment for the breathlessness. Medication can help with this. Please contact your GP surgery and ask for help.

You have had some supportive replies and we are concerned. If you have time, please let us know how you both are.

secrets22
secrets22 in reply to Bella395

I will indeed let you know how things are,and thanks to all of you who are supporting me,it means a lot.

Bella395
Bella395 in reply to secrets22

Thank you for letting us know how you are secrets. I do feel for you and am hoping that you will get more support in the near future. I know from my friend’s experience that you have to shout up sometimes. I couldn’t believe how neglected she was when caring for her terminally ill husband. I could see from the television documentary how bad things are in your area. It was in stark contrast to the medical and social support that we have experienced.

I just don’t know how you are managing to continue caring almost alone. I hope that your own health is not being undermined by being a carer but I fear that it is almost inevitable to a certain extent. 😟

This is appalling! No wonder u ended up in tears secrets22! This is a totally desperate situation, and the worst part is that it is not a one off! 😡 I can completely understand ur decision to let David go with a bit of dignity in tact. Support seems to be undermining everything that mite b seen as care

Tell your GPto sort out Fast track Continuing Healthcare immediately!

Hey Secrets22, hows things with you?

secrets22
secrets22 in reply to lell1

i am doing ok ish ,not wonderful but ok......thank you for asking.

lell1
lell1 in reply to secrets22

anything we could do that would help?

secrets22
secrets22 in reply to lell1

Thank you so much,but i will jog along ok until we see better days,and i wish you joy and contentment.x

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