Wits End

[Uzula]

My mum was discharged from hospital yesterday after nine weeks of being an in patient, she is now on home oxygen therapy as the heart failure is now causing problems. She has been home for just over 24 hours and is driving me crazy. She keeps either fiddling with the cannula tubing or just taking it off full stop. I`m in and out of her bedroom checking constantly to see whether the tubing is still up her nose. Mum was as good as gold in the hospital but now she is back to her usual difficult self. What can I do to make the cannula more secure, any ideas. I`m constantly worrying about the damn thing, can`t hardly sleep or eat and she`s only just come home! She`s always been a difficult person. I`m just sounding off really, sorry.

[Hidden]

Does she need to live with you? Might she be more content in residential care where she would behave more as she did in hospital. It is pointless making yourself ill, you won't be able to care for anyone if you crack up.

[Uzula in reply to Hidden]

She doesn`t live with me I live with her and no she absolutely wouldn`t be content to live anywhere else. Hopefully things will settle down, I`m just tired that`s all.

[Hidden]

Hi Uzula,

I recognised a little bit of me in your post and I bet a lot of other Carers past and present will too. The endless and sometimes thankless task of having complete responsibility for the care of someone else, when any help has gone home to their own, more carefree life, leaving you to struggle alone with all the problems. Sadly I don’t have the solution to the cannula for you, nor, really, for the way you’re feeling right now. All I can do is to say I feel for you and can only encourage you to ‘hang in’ and just do the best you are able.

Certainly ask for advice and help from any health professional involved in mum’s care. It’s just not good enough leaving you there to struggle alone with the practical aspects of caring for your mum.

So, although it’s a real help having a good old rant here and it does release a bit of the pressure, it doesn’t help get change in the way that having a firm discussion with mum’s medical professionals does.

You can only do what’s possible and when you reach that point, others have to step in to assist with the practicalities of it all.

Try to get a rest for at least a few minutes at a time. You are a human being with needs of your own. Do please remember that, and if you have to step outside and ignore mum’s needs for a few minutes, then that’s what you have to do.

Very best wishes and I hope you can dig deep and manage to carry on with the great job you are doing.

[Uzula in reply to Hidden]

Thank you for your reply Callendersgal, it made me feel a bit better.Xx

[Roessner541]

Maybe it is uncomfortable I would talk to her go to see if there is a way . I use to wake up when mine would come out but I didn't do it on purpose

[Uzula in reply to Roessner541]

I know mum doesn`t do it on purpose, her having vascular dementia doesn`t help. When I visited her in hospital, sometimes she`d be sitting there with the tubing in her hands. Mum gets really irritated and cross when I reinsert, its just frustrating all round.

[Roessner541 in reply to Uzula]

My mom was in the hospital with cancer quite awhile ago now and they were trying to get some nutrition in her so I was trying to get her to eat a popsicle she said if you like them so much you eat it and threw it at me. There were times I thought I would go crasy I was also taking care of her husband at the same time. I was living in the Looney bin. Do try to get some help I had siblings but none would lift a finger.

[Gambit62]

I can totally relate to the frustration - my mother also has dementia and it's so difficult to know what to do for the best when there isn't something rational there to talk to. I don't live with my mother and she isn't end stage at the moment but she has multiple complex medical conditions and just trying to deal with all the getting her too and from doctors appointments and make sure appointments are booked has got me well beyond what I feel I can cope for. Basically I think you are doing an amazing job - you probably don't feel you are but you are!

[glo42]

My husband was also diagnosed with vascular dementia and heart failure and I was his sole carer and can sympathize with how tired you are. Have you heard of "Twiddle Muffs"? I have knitted many of these to pass on to help people with Alzheimer. Dementia and ADHD sufferers who get agitated and use these to help with good effects to stop fidgeting and pulling canulas out. They are used in elderly hospital wards and also Care Homes.

I am now knitting a tube which staff slip on children's arms and it stops them pulling canulas out. Perhaps you could try using tubigrip over your Mum's canula so that she can't pull this out easily...... just a thought. Sending a hug to you today. Good luck xx

[Bella395]

Your mum’s care needs are likely to increase. It doesn’t bode well that you are already stretched at this early stage. You might need to consider this in the long term ie how long you are going to be able to deal with it. Your own health might suffer if goes on for too long.

It sounds as if she is quite difficult. Have you had a carers assessment by the social services department? Do you have any outside help? Have you absolutely ruled out a care home placement? Do you have power of attorney? Are you registered as your mum’s carer? Is your home secured if she does have to go into care? It’s useful to get all these issues sorted then if things get really problematic you are able to deal with it better.

[lKeith]

Uzula

Hi, read your post your mother does seem to be giving you problems, have you tried taping the cannular tubing or moving the machine out of her reach so she can't turn it off.

Tell her she will have to go back to the hospital as a permanent patient if she carries on this way. Be strict to be kind.

IKeith

[Vonnieruth]

Could you see about getting someone in for a waking sleep in where they would check mum through the night Least that would give you chance to sleep and recharge