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Carer for Heart Failure - Page 2 - Carers UK Forum

Carer for Heart Failure

Tell us a bit about yourself here.
Hope it all goes well for you Hollyhock
I hope you feel more encouraged to be starting on these things, it isn't easy, it is facing the inevitable.
But it is removing the elephants from the room.

There may be allsorts of things suggested for your mothers care at home and not all of them will be free, eg an emergency pendant or wristband to get assistance if she falls or her heart goes.
Bed alarms for if she's not got back into bed.
Many things they might try to push to you.
Say you will think about it.

They might want occupational therapist to come and do an assessment and then tell you about a company that does such things and give your phone number to them. They phone and talk about aids and devices and basically what happens, if it is the same as our area, you buy them or rent them via the occupation therapist team, not direct through them. I tell them I will do it independently. I am not paying for them to have commission when I can buy direct, it's too much like private health and this is the NHS not BUPA etc.

If your mother has an ordinary bed, ask for a hospital style bed that raises her up, they should provide without quibble, the district nurse said yes before I finished asking and it was here before she was discharged from hospital.

The emergency pendant device is a call button on a pendant or wristband
There is a wall mounted loud speaker device linked through the telephone line
when the button is pressed it makes a call to the emergency help centre
it rings very loudly
they answer through the loud speaker
they speak with your mother and send someone there
if your mother is not responding or in another room and can't be heard they send someone round
They don't always have enough staff to respond quickly, one time we were told 4 hours, this was winter and mother was on the floor.
They should phone you to alert you anyway so you can go round there too
if it is a fall and they believe an ambulance is required and you are there or will get there before their response person then they might decline to come and say it is an ambulance matter.
You need to ask questions and see the terms and conditions

That device was a great peace of mind before I came back home and even now she has it in case she needs to use it if I have gone out for things or if she has fallen out of bed and not injured herself and not banged her head.

Our device has a periodic test done, they phone me and ask me to try the call button to see if it works and when they answer I tell them it's the scheduled test and they confirm it is working.
it is unsavoury, but now is the time to get all those conversations out of the way before it gets too close to the time and too upsetting or too late.

I had those courageous conversations, to get rid of the elephants in the room because politely ignoring them didn't get rid of them, it just made it more unbearable.
We got all the paperwork done, POA, updated will, DNAR, prepaid funeral plan so she has the service she wants so if she has to end up in a home, the Gvt don't dictate the allowance for it.

So it is all done, the elephants have left the room and taken dark clouds with them. we can focus on enjoying the day and having fun and leaving tomorrow to take care of itself.

The future is bleak we don't know if it will be tomorrow, next week or many years time, so we are making the most of each day as best as we can.
Yes OC Health rang yesterday. I had the conversation about the alarm with her as some of my elder customers have them.

I will look into benefits etc next week. I am emotionally exhausted as I well know you all understand and I am also grateful to you all for sharing your personal experiences.

I was power of attorney for my grandfather as my father too was an only child but not well enough to deal with it but my grandfather went into a home of his own will. My father died after being admitted to hospital within hours and myself and my mother dealt with the affairs but I have never faced anything like this.
I can appreciate how exhausted you are, mentally and emotionally, it is an intense time for you.

Having gone through all that with your mother for your father and grandfather I think she would want to get things in order to make it easier for you with her. It's not nice raising the subjects, emotional, difficult to raise and feels insensitive to do, but as said, it is good to get them done and out of the way, it will be a massive weight off both your minds.

You are facing a lot of unknowns and it is a cliffhanger and it will remain one if your mother keeps defying the odds.
Get that letter to the GP then book a phone call or appointment to see the GP, ask about prognosis and how it will be, say you need to know, you want to prepare yourself as much as you can and be aware of how it will be. It will probably be vague on timescales.

You will have a clearer picture and a rapport set up with the GP if you have not spoken much.

A lot of things will be off your shoulders with all the above done and I hope you will feel easier.
We touched on the funeral yesterday. The plot with my father is already booked. I will busy myself next week having more of the conversations and getting it all done. Then can move forward.

I have already made lists and lists as I was sure when she became ill last week that it was bad and we may loose her. So have already had conversations with my husband and sons.
That's good progress Hollyhock.
Your mum might be relieved to be sorting things out.
You only have to do them once, horrible as it is to do you know you are doing right for them and you won't have to do these things again and you can enjoy the time you have.
We felt so much easier after.
Yes when it's all done you can move on.

You might have to get used to the rollercoaster ride of health for your mum, thinking it's the end and then it isn't, been through that many times.
Maybe, as far as possible, give yourself a day off?
Do the absolute minimum of work, forget about paperwork, have something quick and easy for a meal, and.... PAUSE.

At one time all four parents were very ill, highest DLA Care, and our son has severe learning difficulties.
Everyone seemed to want a piece of us.
Our "escape" was when we went to a steam rally with one of our engines. Once we got there, my normally very quiet husband could talk the hind leg off a donkey about engineering stuff, our sons were always happy tinkering with the engine, and I had time to talk to my friends or read a book, and often fall asleep!!
bowlingbun wrote:
Fri Apr 15, 2022 3:01 pm
Maybe, as far as possible, give yourself a day off?
Do the absolute minimum of work, forget about paperwork, have something quick and easy for a meal, and.... PAUSE.

At one time all four parents were very ill, highest DLA Care, and our son has severe learning difficulties.
Everyone seemed to want a piece of us.
Our "escape" was when we went to a steam rally with one of our engines. Once we got there, my normally very quiet husband could talk the hind leg off a donkey about engineering stuff, our sons were always happy tinkering with the engine, and I had time to talk to my friends or read a book, and often fall asleep!!
Strangely enough today was meant to be a day off but best laid plans and all that it has gone down the drain. Nothing to do with mother. So today is sorting out all the things mother had not told us about like her sink is leaking , drain is blocked etc. However I have a day off next Saturday for a hen do :)
I haven't been on here as of course things became very busy but I thought I would update as it may help others.

3 weeks my life turned in chaos from PO!, attendence allowance, bits of paperwork getting things delivered, whilst still working in my busiest season. Bonus was we could fix things in her house tht have been vroken for sometime and she usually won't let us.

But this is why I am updating. I finally got to speak to a GP ...me about mother..without mother. I challenged a few things...it turns out the water tablets are way to low that's why they are not working, the nurse did not take the blood tests ordered just general ones and it is not end of life !! I know it's going to be one day but right now it's not. Why oh why the orginal Dr did not think to say once he examined her to say ' it's not as bad as I thought it was'...or something alike I have no idea. But the forms are done, new meds being delivered next week and the proper blood tests being taken.

It took a letter, two online forms and waiting for an appointment to get this info. I was just lucky one of my customers a similar age was put on a much higher dose and that made me query as our drs had been told they were not working and just sent the same amount. Relief but also I went from full speed damage control to ..oh......
It's nice to hear some good news! Thanks for the update.