Is this the beginning of the end?

[embie]

Dad has been in hospital for a week now after being admitted with leg pains. A CT scan showed he has had 3 minor strokes - one possibly recently. The hospital has advised he should no longer have drinks unless they are thickened in case he chokes. He will eat, but only very soft food and in very small quantities. He is wasting away before our eyes.

I don't live nearby but try to get there as often as possible - currently every week - 2 weeks. I know every patient is different but I don't know what to think. Is this the beginning of the end? Should i be there with him? The doctors don't think there is any immediate danger but could this change suddenly? While it makes me sick to think that we could be losing him, he's suffered enough. I feel I lost him a long time ago now already.

 

[Brucie]

Hi embie

sorry to hear about this.

In your place, I'd act as if every moment might be the last if that is practical as far as your time is concerned.

At the same time keep in mind that things can be very up and down and the resilience of some people who have advanced dementia is quite astounding. One day seemingly at death's door, and the next week back to a sort of normality, and lasting a year or two after.

You just have to see how things go, hour by hour, day by day.

 

[Skye]

Hi embie, sorry to read about your dad.

As Bruce said, it may be the beginning of the end, it may not. The fact is no-one knows with dementia, although the weight-loss is worrying.

A few months ago my John was choking on his food, and having his drinks thickened. Now he's back to normal diet, and thoroughly enjoying his food.

All you can do is bear in mind that your dad might not be with you for much longer, and try to make the most of the time you have left. I believe you can pretty well rely on what the doctors say, they're very good at letting us know when the end id near, unless of course it's a massive stroke or heart attack.

All the best to you and your dad,

 

[embie]

Thank you for your replies. I am trying to visit every weekend as working during the week, it is so awful not being able to see him more.

With every day that goes by, dad is apparently eating less and getting more thin and frail. I am so worried about what is going to happen.

On a practical note - when do i mention what is happening at work? When the time comes that we are told he doesn't have much longer left to live I want to be there as much as I can which will mean taking some time off. I have only mentioned to my supervisor once that my Dad is unwell and that was a year ago when he was taken into a home. When i said this to them, they changed the subject!!! (Can you imagine?! My Dad is taken into a home, perhaps the most distressing period of my life, and my supervisor changes the subject when I tell them!!)

 

[Lucy O]

Hi Embie. Unfortunately, as someone said earlier, with Alzheimers people look at death's door and then recover and vice versa. My mother had vascular dementia - which meant lots of little strokes, and was on thickened drinks and liquidised food, for over a year. Having said that,at the end she had several seizures, but her GP told me that there was no immediate danger so not to come up - it was a Wednesday and I was coming home on Friday - but she then died on the following Monday - yes I was with her, but really, really wish now that I had come home to be with her from the Wednesday. Sorry, I haven't really answered your question, but I guess just wanted to say a) you never know, b)swallowing difficulties aren't necessarily the end, but c)most importantly, if in doubt - GO!
Will be thinking of you at this horrid time.
Lucy

 

[Vonny]

I have only mentioned to my supervisor once that my Dad is unwell and that was a year ago when he was taken into a home. When i said this to them, they changed the subject!!!

Hi Embie, it's distressing but some people just can't talk about death or illness. I sometimes think these are the only taboos left in our society. Some people get emabarrassed and don't know what to say. Either that or your supervisor has all the tenderness of a rhinoceros.

You need to give them a heads-up on the situation sooner rather than later. Just explain that he has taken a turn for the worse and that you may need time off soon but you can't say when. Any emplyer worth their salt can't take exception to this, and you can't be accused of springing it on them. Do you have an HR department? It may also be worth talking to them as they may even be able to arrange compassionate leave. This varies from company to company so no guarantees.

Wishing you and your dad all the best

Vonny xxx

 

[Skye]

Hi embie

I agree with Vonny, I'd let them know that things are progressing, and that you may need time off without warning. Also ask about compassionate leave. Hopefully they'll be considerate, though this seems doubtful in the case of your supervisor.

I'd be inclined to bypass him/her -- HR if you have one, otherwise the boss. The supervisor probably wouldn't be able to authorise compassionate leave anyway.

All the best,

Love,

 

[Sam Iam]

Embie, hopefully this site will help you, there is there is also the "carer's act2004"

Carer's Rights
www.direct.gov.uk

You have enogh to worry about without your employer/supervisor.

 

[embie]

Thank you again for taking the time to reply. I will arrange to meet one of the managers tomorrow. Just hope i can hold myself together long enough to get the words out. Horrible time.

 

[Margaret W]

Hi Embie

I have never heard of the Carer's Act, so have a look at it.

Firms vary greatly in how they review time off for such things.

When my dad was dying of cancer in 2004 I was curtly told by my boss's boss that I was entitled to 2 days compassionate leave and anything else would have to be taken out of holiday entitlement or unpaid. I am a lecturer at a University. As it happens, the MacMillan Nurse looking after my dad turned out to be the daughter of our Vice Chancellor (equivalent to the managing director of a company), and so I contacted him to ask if this was the Uni policy (and dropped in her name at the same time). He replied that I could take off any reasonable amount of time at the Uni's discretion, the 2 days was a minimum, and to keep him informed of any time I needed to take. This was a great relief to me. Sadly dad deteriorated very rapidly and I never needed to take extra time off, but the possibility was there.

A small firm might have much more difficulty in allowing time off, you can see their point, but if you worked at my friend's firm in Manchester (employing about 8 people), you would get as much time as you liked, cos her husband died of cancer and she knew what it was like.

If you worked for my husband's employers, you could have a ball, cos they gave him 2 months compassionate leave when MY mother died, and I had a stroke, and I was only off for a month myself!

Keep them informed and take off only as much time as you need. You could probably do them for unfair dismissal if the time off is reasonable and they sacked you.

But as other people have said, sufferers can turn around again quite quickly, you might be pleasantly surprised. I hope so.

Love

Margaret

 

[Bookworm]

Embie - you and your family need and have a right to more information about your father and how the nursing & medical & physio staff see his progress or lack of it. Once you know what they think you can work on your manager - you can ring & ask to speak with someone - this can even happen over the weekend - but obviously over w/end you won't get the consultant usually. Hope you get some peace about this soon as the worry takes it's toll of you

 

[Tender Face]

The hospital has advised he should no longer have drinks unless they are thickened in case he chokes.

Have the hospital advised then how dad is to be kept properly hydrated? I am sorry to be so blunt and cynical, but I know when my mother was declared completely 'Nil by Mouth' at one point I felt it was more to protect the hospital staff from her aspirating on their premises than any concerns for my mother's well-being!!!!

If this really is the beginning of the end then you need palliative care to kick in - and that will allow as much risk-taking as necessary for your dad to be as comfortable as can be .... if the hospital won't refer to the palliative care team ... then you need to ask more questions ...

Sorry if that's not much help - especially if work aren't too sympathetic - I know the dilemma of 'should I take the time off now - or will I need it more critcially later?' It's terrible to have to be worrying about these other things when all you want to do is sit at a bedside .....

Thinking of you, love, Karen, x