Disappointed

[alfjess]

Hi All

Probably my title isn't appropiate to described what I am feeling to-night.

Following on from my post re communication, where I was told by the consultant in the hospital ward "Mum didn't have long" She was moved to a continuing care home, miracles of miracles, they turned her around.

They reduced sedatives, stopped anti-psychotic meds, stopped the pain patch and Mum improved. Wonderful

Unfortunately, to-day when I visited, Mum is extremely agitated and hyperventilating again.

I am so worried and depressed. She may have to be sedated again.

This is a horrible illness. A few weeks on a high, thinking everything is stable and then a slap in the face to remind me that it is not.

Meanwhile, I didn't sleep very well last night trying to decide whether to move Dad from his present home, where there is not a lot of stimulation for him and he is refusing to get out of bed or keep him where it is familiar.

So very sorry everyone for this whinge, but I am feeling everything getting on top of me and just to top it all of, I had a disagreement with my brother. What's new

Sorry
Alfjess

 

[Grannie G]

Oh dear Alfjess, so this improvement in your mother was only temporary. Perhaps the medication was right in the first place. And now she has been off it for a while, her original symptoms are returning.

And do you really think your father will be able to cope with a move at this stage?

I really don`t want to upset you further and no, you are not wingeing, nor should you apologize, but do you think you are taking too much on. Your parents are very frail and you cannot solve their problems.

It doesn`t seem as if the medics can either.

Forgive me if I`ve been too outspoken.

Love xx

 

[jenniferpa]

Alfjess - is there any possibility that she has some form of infection? You know how those can change people overnight.

As to moving your father: although I wouldn't normally suggest change, if he's not getting out of his bed perhaps a move would be in order. I'm thinking that if he still stays in bed at the new place then he perhaps won't notice the change so much, while if he's more stimulated then there is that advantage.

 

[alfjess]

Hi Slyvia

No you haven't been too outspoken I welcome everyone's opinions. It can sometimes help me to see things from another angle.

Jennifer

Thanks, I hadn't thought of an infection.
Mum is prone to UTIs.
The GP visits the home tomorrow. I will phone first thing in the morning and ask if they can get a sample.

As to moving Dad, I still cannot decide. When we visit, lovely though the home maybe and he is receiving good personal care, all the residents are sitting in this very comfortable big lounge -- doing nothing -- not even talking to each other.

There is a small television, that only the few who are near it can see, but even then, it is normally only showing a video of someone singing hymns. Sometimes there is a CD playing -- hymns again. When Mum and Dad first went there, I was told they had an activities co-ordinator, but I have yet to see one.

They have bible, prayer, eulogigy (sp) meetings at night. For the residents who are that way inclined, then maybe this is enough stimulation, but my Dad isn't into religion. I think he is bored.

It is very difficult to decide what to do for the best. As you say Slyvia, I don't want to confuse him more.

Thanks
Alfjess

 

[Skye]

Alfjess, I'm so sorry your mum's improvement was short-lived. A UTI is definitely a possibility, and I hope this is the case, I don't think your mum suffers long-term damage from them?

As for your father, it's difficult for me to advise, as the paople in John's unit are much further advanced. But one thing that does work is that they have a stack of CDs of Scottish music -- you know, all the old Andy Stewart songs, and the latest 'Spirit of the Glen'. These are often playing when I go in, and they do soom to work. People who are totally uncommunicative will tap their feet, or even move their fingers.

If they won't play them, perhaps a personal headset for your dad -- if he likes that kind of music.

Love,

 

[DeborahBlythe]

Dear Alfjess, I'm sorry you are going through a worrying time with your parents and hope that your mum's troubles are rooted in nothing more serious than a UTI.
I have an elderly, very bright friend who is in a nursing home which emphasises religion a lot. He hates it. " It's not that I'm against God" he says, " It's just that I don't need Him following me around all the time". There is, apparently a nursing home worker who keeps tagging after my friend and trying to get him interested in services and prayer meetings and so on. She even turned up at his bedside when he was admitted to hospital recently.

If everything else about your dad's home seems to be reasonably OK, I'd follow Hazel's suggestion and try to get some entertainment in that your dad seems to enjoy. Also I'd speak to the management and ask about that Activities Coordinator. I'd try that first before looking elsewhere because sometimes the devil you know is better than the devil you don't.

And don't go losing sleep over all this. You are doing your very best and the first thing is to get your own strength back before you try to solve any more problems. If you are losing sleep it is time to back down a bit and cosset yourself, I reckon. Kindest regards, Deborah

 

[alfjess]

Hi All

Thanks again for all your advice.

I phoned the home to-day and they have taken a urine sample.

When I visited to-day, Mum was definately in pain.

The pain came on her spasmodically every 5 mins or so, in her chest area. She told me it was very sore and was grimacing.

I spoke to one of the staff nurses, who said they would observe. I spoke to another staff nurse who said, as she was hyper-ventilating, this was causing the pain.

At one point I was ready to insist they called a doctor, then I was told she had eaten a good lunch. Can there be something really wrong if she is eating?? I don't want to be a pest!

As for Dad, he is OK. where he is at the moment, (only bored, I think) I don't really have to make a decision immediately. So after I stop worrying about Mum, I will think carefully about Dad.

Thanks again everyone
Alfjess

 

[elaineo2]

Why is everything put down to a UTI?these people are suffering from a cognitive impairement!albeit that UTI's dont help the situation,but it seems that we all rely on deterioration being down to a uti.Certain extreme behaviour may be down to a uti,but changes inb behaviour must be explored further.elainex

 

[jenniferpa]

Well indigestion or acid reflux or something like that can cause quite excruciating pain. Could it be something like that? Or what's that kind of ulcer that hurts after you've eaten? Is it duodenal or peptic? Anyway, my point is, I don't think eating or not eating is necessarily the indicator some people seem to think it is.

 

[jenniferpa]

Why is everything put down to a UTI? Because most of us have seen our loved ones take a dramatic downturn at one point or the other, only to discover that there's an infection in place. Of course it might not be, but it would be extremely silly not to rule out infection before changing or reintroducing anti-psychotic medication. One someone's OK one day, and definitely not OK 24 hours later it's a good idea to rule out anything that could be fixed.

Edited to add: actually a read a very interesting paper a few months ago about a trial conducted in the US in a nursing home in order to see if UTI's could be minimized. They not only put women on prophylactic antibiotics, but also used a vaginal hormone pessary and various other things and made a dramatic difference not only to the UTI rate but also general quality of life issues.

 

[alfjess]

Hi All

Well visited Mum to-day and everthing is OK.

No chest pain, hardly any agitation and when I told her I had to leave and would see her tomorrow, there was no hanging onto me or screaming.

Talk about every day being a new day.

They are worse than children down one minute, up the next

Still I am relieved that there was nothing seriously wrong.

Thanks
Alfjess

 

[DeborahBlythe]

That's wonderful, Alfjess, I'm really pleased.

Now listen. My mum two years ago was complaining, allegedly of chest pains after she began to deteriorate with a UTI, and was 999'd to hospital, admitted and subjected to lots of tests including ECGs, blood tests and Lord knows what else. It was a dreadful expereince because she was on a mixed sex ward to begin with, where there were some pretty foul-mouthed men resident.

On her admission I was told earnestly by a doctor young enough to be my son that if my mother had had a heart attack they would not be putting her into intensive care, i.e she would be a goner. I was very very distraught although retrospectively I do understand why he told me this.

Anyway, to cut a long story short: all they concluded in the end was that my mum had bad constipation, nothing worse. Then the home wouldn't take her back.

So get them to rule out the common things first, like the UTI for the confusion, and indigestion, and constipation for the 'chest pain', and as Jennifer says, ulcers and reflux before they get onto the more heavy-gun diagnoses.

No, I'm not medically qualified, but I have followed my mum's progression in every twist and turn for a long time and I also have a friend whose mum had dementia, with whom I have swapped experiences. Not to mention learning from the experiences of other 'lay' carers on TP some of whom are often better informed than professionals.
Best wishes, Deborah.

 

[Taffy]

Dear Alfjess,

That's good news on your mum I hope that things continue to go well.

About six weeks back mum become very agitated the home cleared her of a UTI and by the third day administered anti psychotic medication. Two days later mum was admitted to hospital after a fall the CAT scan showed she'd had a brain bleed. Mum was extremely agitated she was also found to be constipated and her bladder wasn't emptying as soon as they catherized her and her bladder emptied the agitation settled she was wrapped in warmed blankets, she slept like a baby.

The nurse said to me, if my bladder was that full I would be agitated also. Sometimes I think anti psychotic medications are over used I am also aware of their need.

The huge advantage of TP is we all get to read about a whole range of situations and we can learn from other experiences.

Take Care, Taffy.

 

[Cloudwatcher]

Dear Alfjess,

Hope today has been another good day for you and your Mum.

Best wishes.

Lee x

 

[sue38]

The huge advantage of TP is we all get to read about a whole range of situations and we can learn from other experiences.

For me, apart from the support, this is the strength of TP; it opens your eyes to so many possibilities that you (and the professionals) had not considered. Could this be a UTI or maybe a TIA? Although such and such a drug could be beneficial, should we consider the problems of over-medication? etc. etc.

I would put in a plea to everyone reading this, that you post your experiences. You may not always get the answers you are hoping for; you may feel you are 'whingeing'; but there is always someone, somewhere who will benefit from your post.

OK, am stepping off my soap-box now

Alfjess, good news about your Mum.

 

[heartbroken]

Sue well said thanks
I'm newish on nere and get so much by reading the posts, I'm going to post a new thread as I'm in need of advice but didn't wont to moan until reading yours as I know someone could have a answer for me
thanks sorry for going on

 

[heartbroken]

Sorry Alfjess also ment to say pleased to here your mum is getting the help she needed, best wishes

 

[alfjess]

Hi All
Thanks for all your support and replies

I visited Dad to-day, not Mum, but a good friend, who fills in for me with Mum, visited, and said Mum is very agitated again. I guess some days are good and some are bad


Sorry to everyone who advised against this, but I have asked mum's care home, to do an assessment, re. moving Dad.

Let me tell you my reasoning and please tell me if you think I am wrong. I won't be offended, I would like all the opinions you can give me on this. It isn't written in stone, yet.

1) There doesn't seem to be a lot of stimulation for Dad, or indeed others, in the present home. (Is this why Dad won't get out of bed?)
2)New proposed home, is a nursing home and as such, has RGNs.
If it hadn't been for a Philipino carer, who had been a nurse in the Philipines and rescusitated Dad, then we wouldn't have Dad now. I was quite shocked to discover that none of the carers have a basic first aid cert. in his present home.
3) If Dad moved to the same location as Mum (different units) then they would both have more visits. The family could visit both of them on the same day, rather than visiting on seperate days, due to distance.
4) Being able to visit both on the same day, would give the family more days of, without Mum and Dad being deprived of visits.
5) A really nice to have situation would be, if Mum and Dad could visit each other in the day.
Mum's unit manager has said she is willing to try it, but if it causes too much distress to either of them, they won't try again. Fair enough, but at least they will be in the same complex.

Love
Alfjess

 

[heartbroken]

I am fully with you at least if they do a assesment you will know more. If he is so unhappy then surely it won't hurt to try, and you will be happier that you are doing something to help.
hope it works out for him

 

[jenniferpa]

Well, you know, I was someone who was not convinced that moving him would be a bad thing, but even if I had been, I think #2 would have given me a push in the "move" direction. How can it be that there is not someone qualified in CPR on duty at all times? I was a Girl Scout (aka guides) leader and had to be CPR certified and that was just for a couple of hours a week.