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[Territa]

Hi all, it has been a while since I logged in here. Mum has been ill for some time now and we thought we had seen most of what had to come. But I could really use some advice. Mum has been parked on the end of her bed since 9.30am. She would not get dressed or take her medicine or even consider the thought of daycare today. We have trried being nice, being firm, being not so nice (I know I shouldn't but sometimes it gets very hard being so reasonable all the time) She is still in her p.j's and has just given the nod for a cup of tea. I am in the process of reading a book called "Contented Dementia". So far all the reasoning in it refers to times of the day we may call "quality" which is not very helpful for this moment in time. Please, please if you have any advice it would be gratefully recieved, I just want to keep her healthy and happy, but every time she looks at me lately I seem to have developed two rather large red horns.

Terri

 

[jenniferpa]

My first thought is: could she be ill? Any kind of infection can knock people for six, and there may not be any other obvious signs except for behavioural ones. UTI's are the very often the culprit. Also, constipation can also cause problems. Is this a new thing (i.e. has she done it before)?

 

[Territa]

to a smaller extent. She is not ill. My mum had me then five boys. She seems to relate better to men. I don't mean that badly, she just does. I think when I took on looking after her it was hard for her at first. I know that illness can happen but that would be all the time she would not be abler to be like that one minute and depending on who she is with be fine the next.

 

[Territa]

We have looked at her medication but I would rather have mum stroppy than comatose.

 

[jenniferpa]

So, while you're currently experiencing this, it's not particularly a new pattern. So your askign for management tips?

What happens if you ignore her? That is, stop trying to get her to take her meds, of make her food or cups of tea? I think it's a great mistake to assume that someone with dementia can't be manipulative (just as it would be a great mistake to assume they are being so). It may not even be conscious on her part. Have you also tried giving her just two choices (e.g. blue trousers or red skirt)? So rather than asking her if she wants to get dressed, assume she's going to and go from there. I do think we (as carers) can become inclined to try persuasion when it's not a good idea. Unfortunately, I think if you try a number of approaches in fairly rapid succession that can mean the day is a wash: stubborness takes over and "refusal" is the default position.

 

[Territa]

Stubborness has been the position since a.m. We left her alone for two and a half hours while staying within hearing distance in case she went near the top of the stairs, it did not work. She has not been to the bathroom since last night. If I look in at her she shouts. My brother has tried but to no effect. Dad has gone out for a wee while, he is finding it very hard going at times.

 

[Territa]

Don't get me wrong, we have some wonderful times but I think that is what makes the bad times feel so much worse.

 

[ella24]

I think the fact that she hasnt been to the loo is probably the key - either an infection or dehydration (caused by a Urninary Tract Infection) could be making things worse.

Do you have a GP you could ask for an urgent call-out appointment (explaining the problem)

 

[Territa]

No, Mum is fine. She is very healthy, no constipation we have been through that one before and no water infection we have also been through that a while ago. I know the signs. I have been with mum as her fulltime carer for over 15 months now. If there was an infection of any sort she would not be capable of changing mood as she does when talking to other people.

I know it will get worse as time goes on, maybe I am deluding myself. I can only do my best and tomorrow will be another and perhaps better day. I thought I could do everything for her and realising now maybe I can't. It's a hard pill to swallow. Thanks for listening.

Terri

 

[ella24]

If there was an infection of any sort she would not be capable of changing mood as she does when talking to other people.

Yes she could!!! even very sick people can remember social graces and put on a pleasant face!

The fact she hasnt been to the loo is a bit worrying, and would be reason enough to call the GP - even for a chat and to put your mind at rest.

You aren't letting her down...

e

 

[Territa]

Mum has been to the loo figuratively speaking. She is sitting in a very damp and possibly soiled pad. There is no way I can reach her at the minute. She wants nothing to do with me. My dad and brother are not able help her realise that she would feel much more comfortable if she would let me help her. I can't force her and there is no-one else for me to call on at present.

 

[Territa]

I have tried and continue to try while giving her some space to help her. I love my mum dearly and have always said that if my caring gets in the way of her wellbeing then I will do whatever I have to for her. I don't think I have reached that point yet although I accept it may arrive sooner than later.


Terri

 

[Clive]

Hi Terri

I had something similar with my mum just after she had been diagnosed with AD. We never found a specific cause though we called the doctor several times.

She went through a phase, which occurred on the odd day, over several months during which she would just lie in bed, ramrod straight, appearing to be dead. There was nothing anyone could do about it until whatever it was had worked through her mind.

This happened many times but two examples that come to mind are:

1. the day when it had got to lunchtime and mum was still ridged on her bed. Nothing would get her to move or say anything more than the very occasional “leave me alone”. I rang for the doctor and a very young handsome male locum arrived. Mum opened one eye, looked the young doctor up and down and said in a very clear composed voice “If I’d known you were coming I would have put my teeth in”, and promptly got out of bed and behaved in her usual manner (for a person with AD) for the next few days.

2. worried about this behaviour I took mum home with me for a weekend. On the Saturday she behaved perfectly and we had a lovely day. Sunday morning we had the ridged dead body in bed again and nothing my wife and I could do would get any response from mum. At three o’clock, just as we were about to ring for the doctor, mum got out of bed and was her usual (AD) self again. She had no idea what she was doing.

All I am trying to say is that I found mum’s AD played some very strange tricks on us, which were difficult to understand. We did call the doctor but never found a cause.

Best wishes

Clive

 

[Territa]

Hi Clive, thanks for your response. Yes she has done that before the longest was untill 4.30 on a Sunday, then it was as though it did not happen but I had managed to get her washed, dressed and have a bit of breakfast before she zoned out. This is the first time it has been an all day thing. She is now saying someone is coming for her and she has to wait for them. I have tried suggesting that if I made her more comfortable she could wait downstairs in her dressing gown then she would see them come in. But nothing is going to shift her. We are taking some tea up to her and hopefully she will come around soon but I am glad that she is not alone in doing this. You cannot say what is normal for AD sufferers as each person can show in so many different ways. She has a very strong mindset but she was a strong person before AD. At least she is talking to me now so that is progress.
As I said earlier tomorrow might be a better day for her.

Terri

 

[Christin]

I don't know if this helps but FIL went through a stage a while back when he refused to get out of bed. He said he was too ill and we would call the doctor who said there really wasn't anything wrong apart from old age and that he had no cure for that. After a fall we eventually got some help and now carers come each day to get FIL up, help him wash and dress; things he would not let us do for him. So far (fingers crossed) he has not refused their help and they even comment on what good spirits he is in. May be some outide help would help you too. Best wishes

 

[Territa]

Thanks Christin, I started the ball rolling today regarding some help. I have heard the uniform of a carer can work wonders. It is maybe time both mum and myself have that bit of extra help. Mum never moved from the end of the bed until 8.30pm and that was because she got so uncomortable sitting in a soiled pad she had to move. Got washed, put into fresh pj's then back to bed with tea and pancakes. She has been very quiet today, still recovering from yesterday, she can't remember any of it, and I have left it like that. Happy days, thanks,

Terri