Feels like everything against us

[mumpatsy]

Hi

I've been following this site for a lot of months now and learned and felt a lot from it, however this is is my first post. Mum has lewy body dementia among other things and everything seems to be going downhill all at once. 2-3 weeks ago she was admitted to hospital with heart failure. When discharged and back home it appeared that she was unable to bear her own weight (she wasn't great before but could manage with 1 person assisting). She has been bed bound now for about 2 weeks unable to stand at all. We were told today that the problem is most probably gout and when prescribing painkillers it was stated that ibuprofen couldn't be used due to her chronic kidney disease (which we haven't been informed of either). Anyway we have been through a couple of anxious times when we thought this is the end but thankfully all came right again.

Mum has been sleeping more or less all the time and when she does waken and speak she cries, I cry, she's scared, I'm scared.....there are so many things that are truly hard to deal with and although we have managed to keep her in her own home its looking more and more likely that this may not continue for too much longer. Heartbreaking is the only word that describes the situation.

Sorry for the rant, I could go on forever, I know you are all dealing with your own (probably very similar) problems but I do want everyone to know that although draining, myself, my sisters and brothers are trying to keep on top of it and hoping that keeping mum at home may last for just as long as she and we are able.

P.

[Christin]

Hello Mumpatsy, welcome to Talking Point.

I am sorry to hear about your mum. I hope she makes some improvement, I believe that gout can be very painful. Is she able to take anything for it? I think many people will understand how frightening all this can be, and yes it is heartbreaking for you all.

Very best wishes to you, please do post and let us know how you get on.

[FifiMo]

Mumpatsy,

You often find that people with dementia deteriorate either during or following a period of time in hospital. Aside for the treatment, the dementia causes great stress about being in unfamiliar surroundings too. Then what you also find is that this can continue when the person gets home because home has become unfamiliar to them in the process too. Whilst your mum might be having problems standing and walking, it could be that bed is also where she feels safe right now, given all the recent things that have been happening. This is also something that can happen with dementia sufferers too and it makes sense if everything is scarey around you to "shrink" your world into your bed as that is all that you are able to cope with.

It is still early days yet as your mum hasn't been home from hospital for long. With my mother it took 9 weeks for her to "recover" from her hospital experience, although the recovery was never 100%. So for now, maybe you have to make your mum comfortable, reassure her by having a routine that she can get used to again, and surround her with things that can become familiar to her. One of the hardest things to deal with is often associated with our own expectations of someone returning to how they were before and we seem, perhaps misguidedly, to focus on that, only to find that due to the dementia, things have moved on. As hard as it is, sometimes we have to just go with the flow and try new things and work out what is NOW required and not what was required before, if that makes sense.

I hope both you and your mum start to see improvements soon and that your mum receives whatever attention she needs to keep her comfortable and pain free as possible.

Fiona

[Grannie G]

It wasn`t a rant mumpatsy, it was a heartfelt offload. I hope your mum can be helped to stay as comfortable as possible.