Odd one out

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Dad took mam to the new home for respite today. It took a long time before he could get away. Mam was ranting and raving; not good.

Dad is so confused. He says that no matter where he takes her, she is always the odd one out. There never seems to be another person like her. The other patients today were being spoon-fed, dribbling, or screaming out gibberish, or sitting comatose. (I'm sorry, I don't mean to sound derogatory, but I'm not sure how else to put it.) To his mind there never seems to be anyone else like my mam.

Why is this, and does it matter?

He told me his heart is broken, it's no respite for him because he is totally churned up while she's away, and he might even bring her home again tonight.

What can I do? I mentioned anti-psychotics again and he simply said no. I'm completely out of ideas and feel totally lost.
 

Jaycee23

Registered User
Jan 6, 2011
383
0
uk
Hi Collegegirl
I found it the same with my mum even before she went into the special emi unit. At the day centre I used to find most of them complacent and calm and they looked like they had dementia if you know what I mean. My mum looked normal and she certainly did not act normal and was aggressive, arguementative, stubborn and very two faced!! She looked at the others and would be derogatory about them, it was embarressing. When I visit her at the home where she has been since April and she was sectioned for 8 months previous to that in the hospital and still headstrong and wonders why she is not allowed home. I know it sounds awful but I sometimes wish she would reach the stage where she is calm and relaxed but she is constantly like a coiled spring!!. Went to visit her yesterday and took her in the garden to calm her down. After a while she said "oh I have not said goodbye to them", (then realised that she was not going home) then said "oh I have to go back" and had a chuckle then burst into tears.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
It is so difficult to accept all the stages and symptoms that dementia presents in our loved ones but we all know that at some stage we have to experience and accept them.

12 months go my husband was the most agile and competent of the 9 men on his floor. He is still as agile but has moved on in so much regarding abilities and understanding. He will feed himself until he has lost the feeling of hunger and then stop. This can be half way through his main course. He then is encouraged to continue and fed by his carer if he shows no interest. As soon as the fork/spoon is in front of his mouth he opens his mouth and is more than eager to eat. He then might drop off during his drink. So anyone seeing him around lunch time would assume him unable to feed himself and very lethargic.

If he was seen early in the morning they would see a totally different man. He is up showered and dressed early. He goes to the laundry with his carer and brings back the laundry trolley for his floor. He washes up and dries up, he potters in the garden weeding, a very different person from the one he presents around lunch time.

We see the same in the other men on his floor. One minute threatening carers, lashing out and the next minute walking hand in hand with their carer, standing by a chair waiting for their carer to make a cup of tea and not sitting down until the carer is seated, in fact a perfect gentleman. There is one man who can put 20 swear words in a sentence and still make sense and be really aggressive in his talk and within five minutes calms down and is full of 'yes thank you, no thank you and would you please'.

They are all the same just different at different times of the day (does that make sense). Some of the behaviour is difficult to watch and some of the behaviour a joy to see. It takes a bit of getting used to. My husband has been in care now for 12 months and we now look upon the other 8 men as my husband's extended family and as such ours too. They are 9 men all dealing with dementia in it's many forms with fortitude and a lot of the time with humour, they make us laugh a lot and when they see us laugh they join in.

Maybe your Father will slowly accept that care is different within a home. You are not seeing one person travel the journey but many travelling the same journey, it is just that each one started at different times and will be at a different station along the line.

He needs this respite as much s your Mum needs her care.

Jay
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
Dear CG, I am very much afraid there is nothing you can do in this situation.

As to your mum not fitting in, I also felt like that about my mum, in fact I would be surprised if anyone took their spouse, mum, dad or anyone to a care home and felt yippee this is where she belongs, she's the same as all these other people.

Of course the place your mum belongs is in her own home, for you or your dad seeing her somewhere else will feel entirely wrong. But for now she needs to be in respite. I know you understand this, it is just dreadful that your dad can't accept this for even a few days.

Our parents are human, I have seen the full range of misery and suffering that I didn't think would ever affect my parents in the last few years, and there is nothing we can do to make it better.

love x x
 

Dazmum

Registered User
Jul 10, 2011
10,322
0
Horsham, West Sussex
Hi CG, I too know what your dad means, eighteen months on and I still feel that mum doesn't fit, although there are now another couple of ladies who I would say were similar. Everyone is at different stages, that's the problem, and some are 'in between' for a while. It's very hard and I do feel for you and your dad. I'm glad you were able to chat to him today though and I hope that he doesn't get your mum so he can have some rest and time with the rest of his family. xxx
 

jeany123

Registered User
Mar 24, 2012
19,034
0
74
Durham
I don't think that anyone thinks their relatives fit in when they go to a home , My husband was 65 when he first went for respite and all the others looked over 80 and just sat, I was worried because Allen likes someone to talk to , but he just talks to anyone prepared to listen, there is nowhere for young dementia patients ,
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
I can't tell you what your replies mean to me - especially Jay's, which is so very reassuring, and I will try to pass on what you have all said to my dad.

He rang me this afternoon and said he'd been in touch with the home and had been told that mam had settled quite well, which he was very surprised at. I then had to go out to an appointment, and when I came back at teatime I rang him again; no reply. So now I'm worried that he's gone to bring her home.

Feeling very jittery, don't know what to do. My palpitations are coming back, I'm having nightmares every night, and feel completely helpless.
 

CeliaW

Registered User
Jan 29, 2009
5,643
0
Hampshire
Hopefully he hasn't done that CG - what a worry for you.

Could you say to him that if he lets your Mam stay there and takes a good break himself, he will be better able to help her when she isn't in respite? I know you feel that he shouldn't be caring for her alone but that might convince him perhaps?

So very difficult for you - sending you a big cyberhug...

Celia
xx
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Thanks Celia, that's exactly what I do say to him! I'm not sure how much notice he takes, that's the problem.

However, he's just rung me in a happier frame of mind. He'd had to go back to the home with mam's bag, and to go through some paperwork, and got a much better impression than he had earlier. The nurses also told him that they see plenty of aggression, so (although not nice for them, obviously) it has made him feel a bit better.

Me, on the other hand, I still want to cry (which I suspect he does, too).
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Maybe your dad just gave you a considerable insight as to what is going through his mind with regards to your mum. He sees her as different compared with others and therefore his first view is that she will not fit in and yet I know from my mother being in her care home that somehow everyone seemed to rub along just fine. Maybe that was one of the blessings of dementia there. That things were quickly forgotten and so there was a greater level of acceptance and lack of judgement on everyone's part. That wasn't to say that at times things were mentioned, like the lady who was shouting. Always in the context of that present moment, not that she was shouting yesterday or earlier that day, because time had moved on. The thing with respite though is that it is never quite long enough for someone to adjust and settle down and so your dad never sees how things might be in the longer term. He too is aligned to that moment in time where he probably feels that he has to make decisions and be quick about it. Just like today. Your dad's solution is for him to step in and take back control of the situation. Maybe because he has not yet seen anyone/anywhere that has an affinity with your mum and who/where she is at ease. I bet he feels therefore that only he can take care of her. Only he can deliver what she needs. For this reason he is always poised to have to step in and therefore never gets the benefits that respite should give him.

All of this is probably what he himself argues with his own logic. You know however as long as they are in this cycle that nothing is likely to change because there is no time. Same goes with your dad's ideas about medication. He is probably of the view that he sees this as some form of chemical cosh...another reason why only he can take care of your mum. A home, or day care will not be able to tolerate your mum for long. Not because, with time, they might achieve that but they have numerous clients where they have to consider their needs too. I would certainly delve a little more around the medication front with your dad. Yes he has strong views ... Our family were the same too. That was until a psychiatrist spoke to us. He asked us if we had considered the effect that mum's paranoia was having on her? He said as much as it was distressing for us, it was equally distressing for her. Not just mentally, but living in a heightened state for long periods of time can affect her physical health too as it puts a lot of strain on the body too. He explained that her aggression was as a result of the effects of all the paranoia and whilst she couldn't rationalise things in the way that we could, it didn't mean that she didn't believe in all the things that annoy her. We were told that medication was a kindness for mum. That the mental torture she was going through was extremely unpleasant for her. So, we reached an agreement. That he would find the right medication to give her that relief but not to use it to knock her out to the point she became non functioning. Maybe this is the type of person your dad needs to talk to as well. In our case respiridone was the magic pill. What emerged was a calm cheery person. It was not without its cost though. Her powers of communication were affected but we adjusted to that and could hole conversations with understanding on both sides. Would we have changed back, to gain the communication back again? NO never. The psychiatrist was right and our logic was wrong. When you saw the benefits of no distress and even the change in her facial expressions as she became calm, you'd never wish the distress on her again. I guess the fear on your dad's case is that there is no happy outcome and that the only outcome for your mum is to be drugged so she is out of it all the time. He perhaps sees people in homes and thinks that is what happened with them. Perhaps not though, maybe the people are just in a later natural phase on their dementia journey. I can understand his fears though. There must however be someone that can give him the answers he needs, be it a psychiatrist, the care home manager, as AS rep or a combination of all of those. Maybe that is something you could help him with. Finding someone to give HIM the answers he needs?

Such turmoil for all of you ...there must surely be someone out there with some answers for you all.

Fiona
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Thank you Fiona, you are so wise. What you say makes total sense to me. Apart from the bit about medication, I think you've hit the nail on the head. With the medication side of things, dad is actually looking for that magic pill. I've lost count of the number of times different medication, or doses, or combinations have been tried. Each one has been a battle because of the consultant's reluctance, but eventually she agrees to try.

But dad saw a Panorama (I think) programme about anti-psychotics and now doesn't want to try them. Not having seen that programme myself, and if it was up to me, I would still be prepared to give them a try.

Anyway, things do not look as bleak as they did when I first posted, and I'm so grateful for everyone's support, and all the time and effort that goes into your responses to try to help us.

What a great bunch you are.

xxxxx
 

connieonny

Registered User
Feb 9, 2010
77
0
uk
Thank you to Collegegirl for starting this thread, and to all who have commented. But especially thankyou to FIFIMO for her excellent posting. I am going to print this off to keep, having been through all of this (still going through it in trying to place MiL), and having it put into words so clearly, the very same thoughts, the cycles of thoughts my wife and I have ...well, it was amazingly well put Fifimo. Thank you so very much.
 

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