Dramatic Changes in Mum

[LesleyMonty]

I went to see Mum again yesterday and the changes are dramatic. I was only with her two days ago and whilst her speech was still slurred she was in part with me. I think she is losing her fight for life. She is sleeping most of the time, not taking food or drink (well only small amount through a syringe), restless, confused and really not recognising folk. I have sat with her holding her hand, talking to her about nothing really, and wishing that she would just go to sleep and not wake up and she would then be out of all the grips of this evil disease. The Home are being wonderful and keeping her comfortable and are attentive to her needsand really I couldn't wish for anything more.
Just when I had booked a holiday for some R & R this happens and I am now in a quandry as to whether to go or stay. If I stay the inevitable could happen, if I go away the scenario is the same and I could come home and she would still be in the same state. I know that only me can make that decision and my philosphy is that if I go away I can always come back but am I right to do that - I just don't know !!!

 

[Vonny]

Hi Lesley,

Sorry to hear your mum is deteriorating. As you say, only you can decide whether to go away or not. I'm not advocating going BUT my mum has been similar to how your mum sounds for some time now. She will allow herself to be fed certain things if she is having a good day (weetabix and jelly and yogurt is her limit) and will accept a small amount of thickened drink. She doesnt recognise us now, is totally immobile and bedbound, looks in terrible pain when not sleeping or lying staring at nothing.
Yet her vital signs are excellent. Her heart and BP are probably a great deal better than mine. So we have no way of knowing how long we have left. That is one of the biggest challenges of this wretched disease, the inability to plan, the lack of medical prognosis unless there is a phsyical complication. My mum could die tomorrow or in 5 years time. We just do not know and on that basis we are trying to live as "normal" a life as is possible when caring for someone.

Good luck in deciding and try not to feel guilty if you decide to go.

Vonny xx

 

[sue38]

Lesley, I'm sorry to hear about your mum. A sudden downturn like this can be due to a UTI. Have the home checked for this?

I'm sorry if I'm stating the obvious, but we have missed the obvious signs of a UTI in the past.

 

[LesleyMonty]

Thanks Sue, Mum does have a UTI and is on meds for this

 

[ishard]

Lesly ask yourself, what you can actually do about her situation if you stay? If the answer to that is 'I can do nothing' then go.

If as you say you think your mum is losing her grip on life then perhaps I can reasure you a little as an ex nurse.

Generally when dementia sufferers come to the end of the road it is usually a very gentle 'slip away' and before that happens they go into themselves so that they are not aware of anyone or anything.
This going into themselves is very common with a lot of endings for many different reasons.

If she does 'go' before you come back then feel good that she is now free and that you have done everything you could have done to make her life better.

You cannot influence when your mum goes or if she stays, so go on holiday, have a proper break and put the worry in a little box in your head to be opened only on your return.

I promise you no one will think any the worse of you for going on holiday and dont even blame yourself if you arent there when and if Mum does 'go', you may have been at home and not been able to get to her quick enough anyway.

I hope this helps

Ish

 

[LesleyMonty]

Thanks Ish for the heartwarming reply. It gives me comfort to know that I am not being the "horrible" daughter by leaving Mum to go away. "If only" are words that spring to mind constantly but I know that I am doing the best I can. I am off to see her for a short time this morning and as I have already phoned the home to see how she is there is no change and this was expected. If she is asleep as the norm these days, then I give her a kiss and tell her I love her and then try to get on with the "normal" day to day things.

 

[Sam Iam]

Lesley,
My sister-inlaw was faced with a slightly different discision a few years ago as in her Dad passed away(after a long illness, cancer) just before she was due to go away for a weekend, her Mum's advice was this, "your Dad would want you to go, you cant change the situation and you need the rest".

Your are in a time of soul searching Lesley and I totally agree with Ish, go and re-charge your batteries, you are not a horrible daughter, you are a loving daughter, a horrible daughter would not be in turmoil.

 

[LesleyMonty]

I have been to see Mum again this afternoon and have sat with her for a few hours, just holding hands and whispering and talking to her. She has been takin very small amounts of liquid by way of a syringe, and has had some thickened food and her meds are in liquid form. I do not see this as progress however, but my Mum is such a very tough old lady.
I actually got a few smiles out of her today and an " I love you so very much" and it was beautiful as the carer was with us at the time and she said she actually read Mum's lips. She was laying on her back and a little fidgety although I understand why they had placed her on her back but she was so uncomfortable and get trying to turn herself over to sleep on her side. She was eventually helped by the carers and they settled her. She looked so very peaceful when I left her fast asleep.
She looked like she used to when she was at home fast asleep in bed and had kicked the covers off her leg and had one leg on top of the covers. This was normal for Mum when at home and when we had Dad with us.
Funny how many little things you notice when the room is so peaceful and quiet. Although there have been a lot of tears over the last few days and this afternoon when I was with Mum, it has helped to relieve some of the tension but not all.

 

[gigi]

Hello Lesley...

Your mum does seem to be very peaceful and well cared for..which is a huge bonus.

You have a dilemma ..to go away and risk having mum deteriorate and possibly die while you're on holiday..or to stay and miss out on some much needed R&R for yourself.

It's an impossible question to answer. You could ask the Care Home what they think...

You can ask yourself how you'll feel going on holiday....if you're going to spend your holiday worrying about mum..then is it possible to postpone it?

I suppose a lot depends on where you're going and how long you'll be away for.

Only you can make the decision...

Love xx