Indeed, but now I know it is not personal, I can ignore them.
Managed the get up quite well this morning, I asked her to strip off so that we could get the washing out of the way, but when I looked in a short while later she had put trousers on her bottom half. I thought āno matter, weāll get around to it later after I get back from the marketā, but when I did I saw that she was sitting in a chair and, after first trying to insert one pillow case into another she then tried to wear one of them. I explained gently that it was a pillow case and not a garment and we had a good laugh about it. 10 minutes later I returned to find her trying again. We eventually got everything done, washing, pill taking, and Fortimel drinking (though when I explained that I was her āpill nurseā and gave a small curtsey, she broke into peals of laughter and nearly spilled her drink ) and eventually fully dressed for the day.
Marie-Paule passed me the dossier this morning, all 3 pages, I think, to fill in and she will ring the Assistante Sociale in the week to arrange a rdv. Thanks to the good advice on here.
Iām so sorry to hear about your difficulties David and really glad youāre getting help and good advice. I hope the trip to collect Noubia goes well on Tuesday.
David, Iāve probably waited too long to say this, and I know we had a bit of a tiff over the driving thing but I really do feel for you in this situation.
My mum had Alzheimerās and, being physically fit with no other medical problems, lasted a long time in the advanced stages but watching her decline was traumatic. My wifeās nan went the same way as did the neighbourās wife so I often wound up trying to retrieve her when she wandered off. Once found her having a stand up row with another neighbour - somewhat surprisingly a nurse - refusing to believe that the house in front of her was where she lived.
Not surprising, I suspect, as she will have been remembering some other house. I took her hand, said āwhy donāt you tell me about your house so we can go and look together. In the meantime come and have a cuppaā and led her back into her front room.
It is a terrible illness and much more common than folk realise.
This was certainly one of the key aspects of my Mumās dementia. Her symptoms varied, as is I believe common, often getting worse as the day progressed. Late in the evening, sitting in the house she had lived in for 40 years, she would sometimes say āWell, Iād better be getting homeā.
I used to wonder how strange the world must seem if the last 40 years had disappeared from your memory, and how any of us would react to that. Once, when I visited with my eldest daughter, my Mum greeted her with āAnd is this your new young lady?ā Not only did she not recognise my daughter, she was seeing me as the youth I had been decades before.
We were however lucky, because although she frequently lost large chunks of her memory, her personality didnāt really change.
After a couple of days of comparatively easy going (I actually got to bed at 1.15 this morning after only starting the insistent āpesterā process half an hour earlier, of course the less insistent no pester encouragement started as usual much earlier) through the procedures for medicine taking and washing etc., Today, although she seems totally compus mentis, SHE IS STILL IN BED at nearly 3 in the afternoon. I canāt get her up other than with force which I will not do, so the dread awaits when she does finally appear that some of these things will be missed completely. That will be when I prepare the evening meal.
As I did say earlier, although the nursesā 2 minute visit each day to supervise the taking of one pill and a few sips from an energy drink, did seem uneccessary to them, and to me, at least their impending possible arrival did get her out of bed, at the cost of up to 2 hours enforced inactivity on my part.
I have been re-reading this dossier I am to fill in, I think I have finally decided that I am not the demandeur, she is, but in any case I will make blank copies and fill them in for a friend, and also our neighbour, to peruse for accuracy before I complete them. The neighbour, Marie-Paule, rang this morning to say that the Assistante Sociale will ring her next week to give her/us a rdv so I have a little time to get it right.
Clicking on the heart is not so much a ālikeā thing. That is not my sentiment. Rather, it is a heartfelt reaction to what you are going through.
This may seem strange David, but keep these words. One day they will be invaluable for someone else going through what you are experiencing right now. They will learn that they are not alone and others have been there before them.
Dare I ask? Did you collect Noubia?
It seems dementia takes so many different forms, but the one I wish to counter is the assumption of some blissful regression into some childhood. Not denying that this exists, merely suspecting that those are the few lucky ones.
My stepfatherās dementia took the form of a regression through his lie, so for instance, eventually he no longer recognised my mother (his second wife). However quite late in their relationship he told her that he hadnāt spent the whole of WWII in Cairo, but had been trappped on Malta during the Nazi bombardment of the island. Eventually he had been relieved by an RH ship, but it had been sunk leaving Valetta harbour and heād swum back to shore and had to spend several months under bombardment. In his final weeks of regression his mind couldnāt go back to childhood, instead like a scratched record it got stuck on his repressed trauma from half a century earlier as he began shouting war time military commands from his hospital bed
Well, it is 8.46 on Thursday morning. She wouldnāt get out of bed at all yesterday. That means that she has been there since 1am on Tuesday night/Wednesday morning, almost 18 hours. She had nothing to eat yesterday, no medicines and no personal hygiene. She is awake now and I asked her āwill you be getting up today?ā The reply was yes, but no answer to when. I could sweep the blankets off her, but when does necessary help become abuse? I canāt force her.
Iām wondering David whether the UK Alzheimerās Society could point you in the direction of an online self-help forum for people who are carers? Each patient will have their own āfoiblesā but at the same time those of you who are carers will have experiences in common. Maybe this is the sort of situation other carers are also going through and they have found ways to help , whilst recognising this fine line you are all walking along.
No, you canāt force her. But might she be responsive to quite a lot of chivvying (how do you spell that word!). Both my parents in law developed dementia - different types - which we found very hard. The advice we got, and which worked was to agree with everything, not contradict, and ignore opposition but keep on going. Wetried to remind them endlessly of positive things, so used very happy positive voices to say things that might motive to move - a favorite TV programme, a cup of tea, a view out the window - anything! Basically what you would do with a three year old child.
It is hard but you are doing really wellto keepmanaging.
Iāll try @SuePJ what you suggest, it canāt do any harm and I might pick up some tips.
@JaneJones , I think your chivvying is my pestering, it amounts to the same thing and with probably the same results. That is, nothing. Yesterday morning we kissed and cuddled and she promised to get up. half an hour later I tried again, then again, a little more forcefully and urgent then. All I get is a smile and a promise.
Today while on the walk with Jules and Noubia I got in a tangle with the leads, while doing that Marie-Paule rang but the signal in the forest was intemittant so we put it off till later. Once home I got several messages from her, because she got confused with the date of a rdv and at that point my inbox was full, so we rang and texted tripping over each other till I finally got the message, the Assistante Sociale will come here on October the 12 at 1400. I went for my swim and the 15c water refreshed and calmed me, then back in the house I saw her emerging from bed. Moments later, after drying and dressing I returned to help her but she was tucked up in bed again !!! She is still there, she hasnāt eaten or been to the bathroom for 36 hours now.
Could there be something medically wrong with her and sheās not feeling well and wants to stay in bed? Being overwhelmed with some symptoms might mean some others get missed
This is so terribly sad.
From my very limited experience (an aunt), sometimes people go through a phase when they are aware of whatās happening to them, at least intermittently, and they hate it, and they seem to feel that by withdrawing from everything they are making things easier for other people. Which of course they are not. My auntie had good days when she could hold a conversation and bad days when she was three sheets to the wind. The three sheets to the wind days were actually less harrowing because in her lucid moments she often became distraught and cried because she knew she was being a burden to her children. She kept saying āI donāt want to be a burden to them, what can I do?ā That was what I found heartbreaking. And it was those days when she often turned her head to the wall. Having random conversations about being back at boarding school and was it nearly the end of term, was sad for us but at least she wasnāt so distressed.
I can echo your experience to some extent @Sandcastle . During the last period of her life, my mother mainly seemed completely unaware of her condition - she clearly invented things to bridge the holes in her mind so wasnāt all that aware but then there were times when she could obviously see what situation she was in and it was appalling for her. I so wished she hadnāt been able to see that. It was almost like the curtains being pulled back for a moment and then closingā¦
I donāt think David is seeing this sort of thing - just the sort of horrible lethargy which also overtook my mother for long periods of time. Vascular dementia and Alzheimers seem to have a different trajectory
I mean apart from the dementia.
Plenty of cases where additional conditions have been missed, as carers have been overwhelmed focusing only on the dementia.
I also recall one guy I worked for in Mayfair, I got asked back more than once so I was able to learn the outcome. The second time I came to work for him for a few weeks he was telling me his wife always said she was tired and didnāt want to go out, whereas he liked going out for dinner as he worked alone all day managing investments as a one-man band and they were having arguments about it, but she had always been like that.
The third time I went back many months later, his PA told me quietly his wife had been diagnosed with pancreatic cancer, and this was why she had been feeling unwell, and it hadnāt just been her usual reluctance to go out for dinner and socially when he was all for it (which had been longstanding), and she didn;t have long to go and he was very regretful heād been pushing her to go out and thinking it was just her usual reluctance that heād had to live with for so many years.
Iām sure you also saw my earlier replies on thread above Jane.
It might be worth doing a urine test if she seems worse than usual. A UTI can make dementia symptoms worse (or even mimic them in people without dementia), especially as youāre saying she hasnāt been to the loo. Has she been drinking?
I work as a live in carer, often dealing with people with dementia.
No longer in living in France but let me know if you think I can help in any way.
Iāve mentioned elsewhere, the occasion when I witnessed the joy of one daughter (with tears streaming down her face) on hearing her father join in with the sing-along. Songs from childhood/wartime/whatever tweaked something in his brain and he joined in with gusto.
Seems heād been ālost to herā for quite a whileā¦ and he sank back into that other world, after the sing-alongā¦ but it gave her some comfort that he was ādadā again for a whileā¦ and she eagerly looked forward to the next visit of our bunch of volunteer-entertainers.
Iād recommend having a go at singing or reading favourite storiesā¦ anything like thatā¦
it might just workā¦ for that moment.
) and eventually fully dressed for the day. 
