So bizarre !

[Grey Lad]

I think a lot of us are determined to keep shouting, Gl and stay on our soap boxes xxxx

Yes, Anne - the bruises should be seen, hun, unpleasant or not. Are you OK? I am still steaming over what happened with your so badly needed respite xxxxx

Thanks reedysue - I wish someone would publish the facts, hun, via my blog or any other means that would get the information and the truths about this illness out there. Just doesn't seem to be any agency who would do it - shocked by what Kassy has told us about how her Mum's situation was consistently played down by the media

Fun and games here this morning. OH in the dog house as apparently he told Mil she could have the day off today (or so she is insisting!). When faced with my refusal to let her stay in bed, the insults have flown thick and fast - as have all the usual little tricks designed to deliberately annoy! Trying to do her hair, she faffed about sitting down (all of a sudden, 'that chair' makes her back ache), objected to me using the hot air styling brush (on the grounds that she prefers the curlers that she 'always uses' at home') and finally , when I had to repeatedly ask her to stop figeting, and to lift her head, I got a grin, followed by a very snarky 'Do you mind if I scratch my head? Is that OK with you?' and when I said of course, she then sat and scratched and scratched for nearly 5 minutes, while I stood likie a lemon waiting to finish off her hair. It was only when I unplugged the styler and said 'Sorry, we are running out of time for me to do your hair - you'll have to go out like that', that she stopped (with a 'huh' and a filthy look). You know, part of me has a sneaking admiration for the sheer inventiveness of her fighting spirit - She just NEVER gives up trying to get what she wants. Its just a pity that she so often chooses me to fight with!

The issue is how to harness that fighting spirit: send for Teepa Snow! G L

 

[MrsTerryN]

Ann your blog shows that even with the best family (saints) like yours the person with dementia can unfortunately still have aggression and other issues whilst residing with family. I do realise that diagnosis of dementia does not give an immediate lack of capacity or social graces .
I do however wish that people wouldnt say "if the person was at home this wouldn't happen" or " i bought my loved one home and they became content" as an absolute truth.
Some dementia blogs, unlike yours, can ,though I am quite sure unwittingly, give the impression that being at home with family is more than likely to improve the person's health and overall cognitive abilities.
My mother is in a nursing home and I have no regrets about that decision. Mum was the one who decided she couldnt live at home and also visited her now nursing home and decided it was the place for her.
Mum now has no insight at all to her condition. Her memory loss is significant but spasmodic. For example she might remember this morning she might not.

 

[Slugsta]

Ann, I am very glad that your respite problem has been solved. Wouldn't it have been nice if the bed had been available, as it should have been, without having to fight for it?!

R Anne, I do hope you are OK. To have had the longed for respite snatched away like that must have been devastating! What would have happened if you had left the CH and gone straight to the airport, for instance? The fact that you were not actually leaving the country does not make it any better!

Mum took us and a friend out for lunch yesterday. She seemed to have problems reading/understanding the menu (her eyesight is OK, we went to the optician earlier this year), is this something that happens often? After looking blankly at the menu for a while she decided to have whatever her friend was having. We don't get that when we go out for coffee cos we usually go and look at the cakes and decide what we want,so I had not picked up on this before. Other than that it went OK so I have nothing to complain about compared to many of you.

 

[Amy in the US]

Hi, all, I've been around intermittently, as I've been buried with admin/paperwork, and also a little wrought up about the holidays, as we say in the States (first year with my mother in the care home; American Thanksgiving was different; we will see how Christmas goes). Also I've started a part-time job, because apparently I didn't have enough to do?

Anyway, I do pop in and catch up and am sorry not to have something specific to say to everyone, but thanks as always for everyone here.

I did want to respond to Slugsta's comment/query about the menu reading, as this is something "new" that has happened over the past few months with my mother. I know it's not her eyesight as we got that checked this summer and the new glasses have made a HUGE difference (apparently the eyesight in the left eye was so bad/poorly corrected she was legally blind in that eye--been trying to get her new glasses for the past five years with no luck--thank goodness for the care home). I think she is visually overwhelmed by the menu and by the time she gets to the bottom, she can't remember what was at the top. I would also welcome suggestions, other than, "Mother, they have fried shrimp and shrimp scampi; I know you love those." At the place we take her most often, we don't even show her the menu, we just order what we know she likes.

So, yes, Slugsta, I think this is probably something that happens, but I'd love to hear what the rest of you think, please.

I have also noticed that in restaurants, my mother does best in a booth (although it's harder to get in and out of) because it visually screens her somewhat from the rest of the room, or at least, that's what I think. She seems to be getting more and more easily overwhelmed by too much stimulus. Does that ring a bell with anyone?

Best wishes for everyone for Christmas preparations!

 

[LadyA]

Yes, that difficulty with menus, and with choices and making a choice from a list, is very common. A person with dementia, as the illness progresses, has difficulties processing information. A written list of food choices doesn't convey anything. And too many choices becomes confusing and overwhelming. It works better to limit choices to two or a maximum of three dishes. And if possible, let the person choose visually - let them see the choices. When William and I went out for either coffee and cake or a meal, once he reached this stage, I used to order two different things - say, a chicken meal and a beef meal, and when the food arrived, I'd ask him "Would you like the chicken or the beef?" - and whichever he chose, I'd have the other.

 

[Ann Mac]

Morning all,

Terry, I think that if I ever heard anyone say 'if the person was at home that wouldn't happen', I'd give them an extremely rude response! It may work out that way for some pwd's, but for a probably equal number, it would make no difference at all. Sweeping generalisations of that sort madden me - they equal ignorance and a lack of understanding.

Thank you, pip xxxxx

Hi Slugsta - yep, it would have been nice not to have to fight. And it would be nicer if I didn't now feel that I will no doubt have to fight this battle again and again in the future. I have absolutely no confidence that the one respite bed is safe long term. The thought of having to repeat that battle, over and over, is as stressful as the hands on care can be.

Mil also struggles with menus - and I've wondered why. Just last week she picked up an envelope and correctly said 'Oh - this is addressed to S***' - so she can read small print and at a close distance . She can also, most of the time, read the time off the TV if its showing (though that can be a bit hit and miss), so I don't think that its her eyesight at all. But when faced with a menu, she will look for a couple of minutes then say that she has 'forgotten her glasses'. I think that that amount of print is just too overwhelming for her brain to cope with. If we read out the whole menu, she struggles with that too, clearly unable to remember the 1 st item, by the time we read out the 3rd or 4th. Knowing Mil well, we find 2 or 3 things that we know she enjoys and she will chose from them - and 99 times out of 100, she will opt for scampi!

A big yes on the too much stimulous being a problem, Amy - they often have some form of entertainment or trips in DC. Just yesterday, and not for the first time, one of the carers commented that Mil was 'great' when the entertainment they had in the afternoon was going on - but she kicked off literally as soon as it was over. And they have noticed that this happens with her time and time again. It's why we now try not to include her in events and days out - she simply cannot cope. A meal out is about the extent of what she can manage now - and even that can be difficult

LadyA, what you say about having to see 'choices' rings a loud bell here. What we have found, a few times, is that if a menu contains large, clear images, Mil will point to the pictures and ask just about those items shown. But, this can backfire if there are photographs of puddings that she likes, because she will focus just on the pudding she has decided she wants and its awfully hard to direct her to even think about a main course - all she can think/talk about is the banana split or the ice cream sundae she has spotted!

She continued to be 'grumpy' until the mini bus collected her yesterday morning. The coat loop featured, as did repeated requests to lend her '5 shillings for some ciggies'. When I went to pick her up, I knew before anything was said that there had been some level of agitation, because despite wearing a light top (DC is so blooming hot!) she was really sweaty. In the car, straight into had I seen her Dad? Did he have the children? Was he waiting for her at my house? - though to be fair, a stern 'Look at the traffice - wait until we get home and then we can talk' actually worked straight off and she was quiet for the rest of the journey.

And then the evening just seemed to be one long 'drone' about going home. No upset, no agitation, just every two minutes 'Had I better go home now? What time are the buses to get me home? Are you giving me a lift home now? I'll get my coat - its time I went home now'. Each time, I gently reminded her that she was home, once or twice there were half hearted aruments in response (including telling me that she had promised ' that woman, whats her name, you know her - Mrs . . . . Mrs. . . . Oh, I can't think of her name' that she would go an live with her in London!) but nothing major. And then, after seeming to accept my assurance that she was home, two minutes later she was off again. It made for a long evening, but she didn;t really step up a notch until OH got home, at which poiunt the demands for 'home' went into overdrive and in the end he had to speak very firmly to her as she began to get very rude with me again. The 'stern' voice worked, though, and about 20 minutes later, I was able to get her up to bed with the minimum of fuss.

She has been up in the night though - she didn't disturb us, but I woke at about 4a.m., absolutely swealtering and found the heating dial turned up to 26 !!! Mil does that now and again - having the control moved out of her reach is yet another item on the 'to do' list

Will be sorting Mils kit for the overnight respite on Thursday today. I've emailed the home with a very comprehensive 'this is me' type document, but the prn meds have been changed since then and despite 2 days of trying, I haven't been able to get hold of the prn to find out if they have sent the paperwork needed to allow the new place to give the diazapam, so I need to chase that too.

I've also, being as son is coming home with us tomorrow, got to find a home for the mountain of wrapped Christmas presents that are currently sitting on his bed!!!

Hope you all have a good day xxxxx

 

[Grey Lad]

Glad you are flumping again today Ann. I tire listening to your busy schedule: it sounds exhausting. It's easier here with just the two of us and all offspring a good car ride away. I think we will let Christmas pass although you will see from elsewhere that I have a 12 point plan to sort out our approach to the Festivities.

Maureen in good form at the moment so I think the antibiotics are doing the job. By the way have you invited Teepa over to see if she can help with your approach to MIL? G L

 

[LYN T]

Ann. I don't think that you need any help from anyone regarding your approach to MIL-even Teepa You do brilliantly as it is Hope you benefit from your day's respite but what a battle to get it!

Love

Lyn T XX

 

[Grey Lad]

Ann. I don't think that you need any help from anyone regarding your approach to MIL-even Teepa You do brilliantly as it is Hope you benefit from your day's respite but what a battle to get it!

Love

Lyn T XX

I agree but just be interesting to hear Teepa's suggestions on MIL's presentation.

 

[LYN T]

I agree but just be interesting to hear Teepa's suggestions on MIL's presentation.

I would be interested in hearing Ann's response to Teepa's suggestions.

 

[Ann Mac]

Actually, GL, its not too bad today I have the 'packing for respite' off to a fine art, even if it is a 'new place' she is going to, so that's not such a massive chore. Finding a home for the pressies - well, that might be a bit more of a problem! Pre Mil living here, everything was stashed in my 'office' (which is now oldests' bedroom), and then after, I used to stash everything 'under the stairs' - but now, 'under the stairs' is part of the new downstairs loo, so I've lost that hidey hole as well! I guess its going to have to be my bedroom - though that isn't the biggest of rooms and much of the space is taken up by the super-kingsized bed that Hubby's 6ft 4" frame demands. I honestly haven't a clue how I'm going to fit everything in - though I have a small bag of pressies to be delivered to friends, so if I can drop that off today, I'll have a little less to find a home for

I've watched a lot of Teepa Snow video's Lynn - and so much of what she advises is brilliant, but too often reliant on 'entering' the pwd's world. With Mil, to do that often 'fuels' her delusions and fears, no matter how I try to approach it - and she ends up getting more worked up . I have tried and to 'go along ' with a lot of what Mil says/does just makes her worse. Even DC have said that they find exactly the same - agree with her, enter her reality, and she just gets mired deeper in whatever it is she believes. And they also have found that love lies/distraction is something that Mil is incredibly resistent too - one staff said Mil is more resistent than anyone she had ever encountered before!

So looking forward to the 'day off' and especially daughters graduation - her B.A. grad was hard work with Mil there - this time, with her teaching graduation, we can just wallow in how proud we are of our girl

Had such an 'odd' morning with Mil today! When I got her up she absolutely left me speechless at how clear her recall of the previous night was. OH, as I said, was firm with her. Most of the insults directed at me revolved around an insistance that, even though she accepted she needs help, she said doesn't know why she has to be here because it would 'kill Ann to do anything for me!' . OH spelled out for her a list of what I do do for her - that I make sure she has clean clothes, that I do her hair, that I cook for her and run her round, that I sort her meds and make sure she gets to all her medical appointments. As I said, last night this worked, and there were no issues afterwards - she even gave us both a hug when she went to bed - which she very rarely does with me usually!

In the bathroom this morning, she suddenly announced that she does know how much I do for her. I was reeling from that comment when she went on to say that there was 'no need' for her son to 'throw it all up in her face' as he had done the night before. She hadn't needed, she said, to be told how much help I give her, because she knows.!

I was gobsmacked.

She went into the fantasy realms after that, telling me that I 'should have seen his face' when he was 'screaming at her' , (he absolutely did not scream, or even raise his voice that much), because he looked 'vicious' and he 'scared her'. That isn't true either, BTW. But otherwise, she was so clear on remembering the correct content of what had been said. That is massively beyond her usual level of insight and recall.

Even though I gently corrected her on the accusations against OH, she remained quite calm and - for her - very cooperative. When she came down, OH was braced for her being 'off' with him, after what she had said, but she was OK. We got the usual loops - coat, brolly, could I lend her a few bob for food/drink/ciggies, but nothing too bad.

Then just before the mini bus came, I was stunned to hear her singing at the top of her voice, belting out 'Jingle Bells' along with a TV advert! It was so nice - but so strange.

I'm scared to hope, but maybe the regular dose of diazapam ( we started on the maximum of twice daily on Sunday, because it was such a bad day) is actually helping?

Another job off the list, the CPN has just phoned and confirmed that the necessary paperwork for the prn meds has been faxed to the new respite place. All going very smoothly today, so far

 

[Grey Lad]

I would be interested in hearing Ann's response to Teepa's suggestions.

So would I. Wouldn't it be good if such things were possible? I find it helpful to get views from all sorts of quarters when things are changing and my approaches are not paying off. In fact I'm wondering if I should wake Sleeping Beauty soon or leave her there and find me gone with Gail here. Perhaps I'll toss a coin! G L

Edit We ovelapped Ann or something. Glad things are going smoothly. One thing I am always aware of is the emotional memory being intact. It's amazing what Maureen can pull out of the bag from the past at times. Then she will ask me if I am going to work today? Having been retired for quite some time!

 

[Grace L]

Morning All....

Ann your blog is a very good read, I will definitely encourage others to read it.

I doubt 'the authorities' would ever like us / me to be so honest, and go-to-print about the
carer (not the patient) having bruises as a result of being pinched, grabbed, and on rare occasions bitten.


MiL sent me a Christmas card, well done the Post Office for it getting here as it's a real mix of addresses.
Inside there is a few little lines of her asking me how I was , and saying she would love to see me.
She signed it 'Granny' ....


Menus....
Reading most things became a problem for my husband, but for a long time 'he pretended' , he was very convincing. I knew, but if you / the Docs tested him it was obvious ....

One of his strokes effected his occipital lobe of his brain, and after that, reading anything was difficult.
Something simple like a menu (no pictures) , lots of pages, different print , can be overwhelming... too many choices, and not remembering what you have just read.
CPN and Psychologist said to keep it simple, or give 2-3 choices .



Ann.....
One of my hiding places (I've had to be creative with magpie MiL) is under the kitchen worktops/ cabinets.
If you pull off the plinths, there is a lot of storage under there.

Also... if you have freestanding bedroom furniture, you can take out the bottom draw
of chest of draws, then use the space underneath to hide things, then put the draw back.
Depends on the size of what you are trying to hide of course.

Have a good mini break Ann and family xxxxx

 

[LYN T]

I've watched a lot of Teepa Snow video's Lynn - and so much of what she advises is brilliant, but too often reliant on 'entering' the pwd's world. With Mil, to do that often 'fuels' her delusions and fears, no matter how I try to approach it - and she ends up getting more worked up . I have tried and to 'go along ' with a lot of what Mil says/does just makes her worse. Even DC have said that they find exactly the same - agree with her, enter her reality, and she just gets mired deeper in whatever it is she believes. And they also have found that love lies/distraction is something that Mil is incredibly resistent too - one staff said Mil is more resistent than anyone she had ever encountered before!

So looking forward to the 'day off' and especially daughters graduation - her B.A. grad was hard work with Mil there - this time, with her teaching graduation, we can just wallow in how proud we are of our girl

Another job off the list, the CPN has just phoned and confirmed that the necessary paperwork for the prn meds has been faxed to the new respite place. All going very smoothly today, so far

I do hope the diazapam is starting to work; as you say, early days but my fingers and toes are crossed.

Oh yes! Be very proud of your daughter-Dementia effects everyone in the vicinity of the sufferer so a BIG well done to her.

I've watched Teepa as well I really like her understanding/explanations of what COULD be happening in the world of a PWD. Like you with your MIL some of her advice wouldn't have worked with Pete-some did though. But the decisions of how to react with a person is very much down to knowing the PWD and how they react to you and your response. I think you and your OH have got it as right as possible.

I hope your day continues to go smoothly

Love

Lyn T XX

 

[MrsTerryN]

Hope your daughter and your family have a wonderful well deserved time with her graduation Ann.
Another one re sight. The nursing home asked me to not wear highly patterned outfits. Apparently there is depth perception issues.
Grace i agree re the authorities. Unless you have some contact with the situation it just isnt possible to have people believe it.
Mum is 47 kilos but she is still vitriolic. I feel for the families who have much larger/stronger family members who have this condition

 

[Grey Lad]

No Boots for Puss

Sleeping Beauty has risen and downstairs now of her own volition. Her boots have been missing for a few days so that blown her part in the Panto. I've looked everywhere and can't find them. It's amazing how those thieves get in here so often.

 

[Rageddy Anne]

Food choices, eating out..

Hubs always wants what I'm having, and I choose things that are easy to manage, as he couldn't manage things like chicken on the bone. He watches me to see how I'm eating it, but can't actually cut things up with a knife and fork, so I often discreetly cut mine up and swop plates. He's best with risotto or lasagne type dishes.

He had an eyesight test recently. They said they could resort to pictures etc if he could not recognise letters, and the tests were still helpful as they could show up certain illnesses. On the day, he read every line perfectly, and apparently still has perfect vision, but always says he can't see the menu, not enough light, printing not clear, but never that he can't remember!

 

[Grey Lad]

Hubs always wants what I'm having, and I choose things that are easy to manage, as he couldn't manage things like chicken on the bone. He watches me to see how I'm eating it, but can't actually cut things up with a knife and fork, so I often discreetly cut mine up and swop plates. He's best with risotto or lasagne type dishes.

He had an eyesight test recently. They said they could resort to pictures etc if he could not recognise letters, and the tests were still helpful as they could show up certain illnesses. On the day, he read every line perfectly, and apparently still has perfect vision, but always says he can't see the menu, not enough light, printing not clear, but never that he can't remember!

Much the same here on many fronts. It's interesting to read how others cope with similar issues. Thanks Anne I found your post very helpful. G L

 

[Ashesinthewind]

It's all Greek to me.

 

[Slugsta]

Evening everyone.

Thanks for your insight regarding the menu issue. Mum was easily able to read short sentences when we were out today, and make sense of what she had read, so I am sure you are right in that it is too much for her to take in.

Grace, you are certainly inventive with regard to your hiding places! What a pity that you have had need to be

Ann, I hope that things go smoothly and you all really enjoy your daughter's graduation, I'm sure you must be incredibly proud of her

Ann, I'm glad you will soon have your son with you. My son phoned for a quick chat the other evening. He has pretty much finished his work in Oz so has almost a week of free time. He said he would have to move to a cheaper hotel - can't expect the client to pay for that - but his fare was paid by the client. He is due back on Mon/Tues of next week and should be with us after work on Christmas Eve.

I hope you all have a peaceful evening/night. xx