Conflicting emotions

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
My Mum is 98 and in late stage dementia. She is in a nursing home and after breaking her hip last year is unable to walk. In the last year her ability to communicate has deteriorated and I can no longer understand what she is trying to say. I don't think she recognises me and when I talk to her it doesn't seem to register. She has recently had a chest infection and is on her third course of antibiotics. She has lost her appetite and is sleeping a lot. The staff are concerned that she is losing weight. My sister and I have agreed we don't want her admitted to hospital but I am finding it such a responsibility to make that decision for mum. My head tells me one thing but my heart another.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Hello Midgemay and welcome to TP.

Perhaps we'd have to be robots not to feel torn when head says one thing and heart says another. Thank goodness we're not soulless and mechanical.

If you haven't already done this, it might be a good idea to write out the advantages and disadvantages for your Mum in receiving hospital care to extend her life at this stage in her disease. As you do so, you'll be reminded why you reached the decisions you did for her care ... and you may realise there are a few grey areas you still need to think about.

I imagine for example that you'd always want palliative care to make your Mum more comfortable. How would you want that care delivered (eg by hospice trained nurses visiting her nursing home; or by moving your Mum to a hospice)?
 

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
Thanks

Thank you Alsoconfused for your reply. I am meeting my sister tomorrow to discuss our decision. After reading some of the posts it is obvious how common this problem is and I don't feel so alone which is reassuring. So many things I am feeling have been described by others and it is so helpful to know how they are coping. I don't know why I thought I was the only one feeling like this.
I have a six week old granddaughter and all I wanted to do was tell my Mum the good news when she was born. There was no reaction until I told her the name Dulcie Rose. Then she smiled.
I have made a personalised calendar for her for the last 10 years and this is the first year I have doubts that she will see all the months photos. She has always seemed so strong physically until recently.
I think I need to talk to her GP as well and I hope things will become clearer.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Good luck, Midgemay.

From the family's point of view, dementia seems to be even more frightening and more worrying in the beginning stages than in the middle and later stages, when roles are more sorted out and everyone's learnt the unmanageable can (usually) be managed.
 

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
So true

Yes I agree. I have had some horrendous times with mum over the last 12 years. It is a huge learning curve and there have been many sleepless nights, tears and times when I was at the end of my tether. The aggression and hallucinations, the hiding of possessions and repetitive conversations can mostly be borne if you are feeling well yourself but if you are also coping with ill health and juggling work and family life becomes a constant struggle. As the dementia progresses the aggression diminishes a little and Mum no longer asks to go 'home'. She has gone from living on her own to living with us then on to sheltered accommodation. Eventually it was safer for her in a residential home until she became too difficult to manage and ended up with a broken shoulder and bruises to both arms when an ill-trained carer restrained her with more force than necessary. She is now in a nursing home where we have decided she will not be moved from again. I have spoken to the staff and reiterated that we don't want her hospitalise and will speak to her GP on monday.
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
My mother is 96, advanced dementia, still just about mobile, but otherwise sounds much the same as yours. She is still eating a little, but needs a lot of help.

We have discussed all the scenarios with the care home, and have agreed that there is to be no hospital unless it is absolutely necessary, e.g. she breaks another hip, God forbid - she broke one at about 91 but recovered quite well.

We feel that hospital would be very distressing for her now, since she would be quite unable to understand what was going on, or why. The odd trip to A &E after a fall has been traumatic enough for her. We have said that given her age and stage of dementia, there are to be no IV fluids, and if she begins to refuse food and drink, so be it - she is not to be badgered or pestered.

In other words, except for keeping her as comfortable as possible, there is to be as little interference as possible with Nature finally taking its course. I hope this does not sound callous but neither I nor my siblings feel bad or conflicted over all this, since we know one million per cent that it's what she would want for herself. I went to see her today - she barely opened her eyes, and it was a long labour to give her her supper. She is in such a pitiful state now, such a very poor old thing.
 

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
It's a wicked disease isn't it? I saw mum today and sang 'You are my sunshine' to her and she smiled and tried to sing along. It's little moments like these unfortunately few and far between now that keep me going.
 

memaggie2

Registered User
Nov 9, 2014
60
scotland
When my dad was in the same situation the GP spoke to us about whether giving antibiotics was in dads best interests. I knew that Dad would never have chosen to live in the manner he had been doing and i viewed this as his chance of escape . It was so hard but i have had no regrets in declining further treatment .

The GP would be able to keep your mum pain free but moving her into hospital for further invasive treatment is unlikely to be in her best interests

Its your decision though ,you can only do what you think is best

hugs

Maggie
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
It's a wicked disease isn't it? I saw mum today and sang 'You are my sunshine' to her and she smiled and tried to sing along. It's little moments like these unfortunately few and far between now that keep me going.
How lovely. The first thing I always did was make her a cup of tea, and sometimes I would sing, 'I like a nice cup of tea in the morning..' right through, and she would smile, but alas, I get virtually no reaction now to anything. So sad.
 

halojones

Registered User
May 7, 2014
438
Sadly the infections really make our loved ones deteriate rapidly..mum just stopped eating and wanting to go out recently ,she had a UTI, and although she is a little better, it is definetly a major dip in her illness...I have spent the whole month really worrying that mum would need the hospital(luckily she didn't) we should not be afraid of the hospital, but we are, for good reason.....It would be the last resort for me, I would want palliative care ,or a hospice if it was appropiate for mum...I hope your mum is comfortable and pain free...xxx
 

angecmc

Registered User
Dec 25, 2012
2,108
hertfordshire
Sadly the infections really make our loved ones deteriate rapidly..mum just stopped eating and wanting to go out recently ,she had a UTI, and although she is a little better, it is definetly a major dip in her illness...I have spent the whole month really worrying that mum would need the hospital(luckily she didn't) we should not be afraid of the hospital, but we are, for good reason.....It would be the last resort for me, I would want palliative care ,or a hospice if it was appropiate for mum...I hope your mum is comfortable and pain free...xxx
I agree with you, we should have no fear of hospital for our loved ones but its the last place I want my Mum to be, it makes me feel sick every time I get a call to say they have called dr or paramedics to check Mum over. I have stood there pleading with doctors not to send Mum in. Xx

Ange
 

CJW

Registered User
Sep 22, 2013
212
Bear in mind that deciding you do not want someone to be hospitalised doesn't mean you have to keep to that decision. I instructed the CH and GP that my mother was not to be hospitalised, but every step of the way, infection, kidney failure etc..they asked me if I wanted to reconsider. This helped me a lot as I could ask myself everyday if Mum was better in the CH than in hospital. For us the answer was always yes and it was the best decision possible. thinking of you....
 

memaggie2

Registered User
Nov 9, 2014
60
scotland
If i could have kept mum at home i would have but brother made the decision before i could get there . Once someone is admitted its practically impossible to get them home again and i really think home with the people who love you is the best place to be ( sorry i know this is a very personal belief )
 

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
I have spoken to mum's GP today and discussed the decision to keep mum in the care home and not admit her to hospital. She confirmed that the fact that Mum is not eating is probably a progression of her dementia brought on by the recent chest infections. She is still drinking so is getting some goodness from supplements. She still seems content and pain free and I was assured that when the time comes when she no longer takes in fluid she will become more sleepy and just slip away. Of course there is no way of knowing when and how long this will be. I know that making this decision whilst mum is not in any immediate danger of dying is different to how I am going to feel when that time is imminent but I hope I will not waiver in a selfish attempt to keep her with us. Thank you for your helpful comments and I wish you all well with your beloved relatives
 

Midgemay

Registered User
Dec 29, 2014
9
Buckinghamshire
What have I done?

Went to see mum today. She was angry and abusive. I was told she was happy yesterday but GP saw her and has taken her off all medication. She was being given her meds covertly and they said that as she is no longer eating she is refusing to take them. But she is still drinking so I am now wondering if this is because of what I said to the GP on Monday. Have they misunderstood? I don't want her to be like this. Surely she'll need a sedative and painkillers at least. What do I do now? Should I leave it to them as they have the medical knowledge. Am I just panicking and letting my heart take over from my head?
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
So sorry to hear you are having such difficult times . I can't offer any advice as I am not that far into the journey but wanted to wish you strength for all the difficult decisions you might have to face . Thinking of you xxx


Sent from my iPhone using Talking Point
 

Laine5

Registered User
Jun 15, 2013
44
I would speak to the GP again, you need to know that she is not in any pain.
Thinking of you too