not sure what direction to take, advice please

Julia B

Registered User
Apr 13, 2015
79
0
Morning all, MIL lives with us, her own lounge, bedroom and en suite extension we had added to the house, she's lived with us for a little over a year now, diagnosed for 3, hubby is her carer.
MIL doesn't remember this is our home all the time, wonders where the other residents are, in fact sometimes she thinks she works in " this home". She's declined recently, hears scratching/knocking sounds ( there are none) hides our things and says her own have been stolen ( we find them, in the oddest of places), says the dog puts her mug on windowsills, short term memory is ever so short - but she eats well ( after refusing saying she made food earlier ( she can't cook, can barely make a coffee now).
She seems to be sleeping but has night terrors she says, people ( dead relatives) calling to her, we make sure she has her medication and ten minutes later she's screaming at us for not giving her them, she has arthritis and most days refuses to get dressed, won't go out at all, even if her other son asks, just to his house..and on the one occasion she has gone for a few hours this year ( so hubby and I could visit my dad after his triple heart bypass) she is so unsettled for several days after, telling us she feels like she's upset as as we never sit with her, yet we only left the room ten mins ago..and that she was better on her own, etc etc. We've had three nights out ( one our wedding night lol last November when we actually stayed out, her sister was with her). We pay carers to help her shower, as she kept refusing to and was also refusing to give me laundry " in case". The carer gives me her pj's pants etc now. We're never giving up on her, everything is built for her, even wider doors for zimmer/wheelchair if required...she keeps asking whats the matter with her , we don't tell her its the one thing she most feared ( two sisters died of it and one is in a care home with it, MIL refuses to visit until sis goes home, which she won't). We won't put her in respite, a few hours away and she's all unsettled for days so we don't want her to decline. Do I get the CPN back ( who was a chocolate fireguard ) or a Doctor so maybe she has some tablets to soothe her sleep? Thanks for listening...
 

Pinkys

Registered User
Nov 13, 2014
157
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South of England
What a stress for you all. I think the GP may be able to help with medication, and certainly would be a good resource. but it also sounds like you need more help. SS can be good for advice etc.

You say you are never giving up on her. Does this mean you will NEVER consider residential care? if so, you ned to be doing some planning for additional support as her condition worsens, and sometimes that can mean putting it in before it is really desperately needed.

I found the book 'Contented Dementia' very helpful, for ideas on responding to the unfair reproaches and memory failure.
 

Julia B

Registered User
Apr 13, 2015
79
0
What a stress for you all. I think the GP may be able to help with medication, and certainly would be a good resource. but it also sounds like you need more help. SS can be good for advice etc.

You say you are never giving up on her. Does this mean you will NEVER consider residential care? if so, you ned to be doing some planning for additional support as her condition worsens, and sometimes that can mean putting it in before it is really desperately needed.

I found the book 'Contented Dementia' very helpful, for ideas on responding to the unfair reproaches and memory failure.
Hi Pinkys, thank you for your kind response, and I'll order that book, we are determined to try to keep her with us, so yes we will get carers when she no longer seems to know something's not right with her, but until then I just wish she felt less anxious, we handle the endless repeats, the sundowning, the " tidying"and the lack of family support as best we can, good job we are old "newly weds" lol...MIL is 82, and tiny and frail, she's lovely, I love her but sometimes I'd just like to walk the dog with the hubby, an hour off... hey ho, take care Pinkys, thanks again x
 

Rodelinda

Registered User
Jun 15, 2015
172
0
Suffolk
Hi Julia, your situation sounds very much like mine although I think your MIL is a little further in the dementia journey than my M. So I know what you're saying. We also don't plan to move my mother into a nursing home unless we really can't keep her safe here with us. A call to the GP could be useful. My M takes an antidepressant just before bed and I don't know whether that helps her sleep but although she has very vivid dreams and oftern reports men in her room and gets up clearly 'somewhere else' she rarely has nights when she is clearly upset by her dreams. And I understand the not being able to go out - it isn't the big stuff but the little things like a walk or just going to the shops together that I miss. Take care. Sue
 

Julia B

Registered User
Apr 13, 2015
79
0
Hello Sue, thanks for your kind reply, it does help knowing we aren't alone, and exactly that, the little things are what I miss the most, we can cope without a honeymoon or weekends away or even a spontaneous visit to friends but I do miss walking with him..Will call the GP today, worth a go. Have a nice day Sue x
 

Quilty

Registered User
Aug 28, 2014
1,050
0
GLASGOW
Have you considered a befriender service. My mum had a befriender and she was the only one my mum would go out with. She did not know mum before dementia so had no emotional hurt at her behaviour. For her it was just domething yo overcome. She was a god send. Even someone to have tea and a cake and a chat can be so nice. For your MIL its someone who does not nag her about stuff so becomes "her" friend. Ours came from social services but you could try carer companies or lical churches or volunteer groups. Get planned time every week for you and your hubby. It will keep you going. Can family do a routine weekly visit? Dont give up on getting this time.
 

Julia B

Registered User
Apr 13, 2015
79
0
Hi Quilty, no, her family all find it upsetting so visit rarely, never for long and never offer so only my kids ( 18 and 21 ) and my best friend have looked after her for a couple of hours, when we get back she's so agitated it takes ages to calm her down, then it all gets forgotten so she's fine ...Will look into befrienders, thank you. Have just asked hubbys older brother if he can come to take him out for a pint, or a curry, I work so at least I get some time away, my wonderful hubby gets none, lets hope big bro can at least do that...Thanks for responding Quilty x
 

Quilty

Registered User
Aug 28, 2014
1,050
0
GLASGOW
You might need to accept the agitation. If you had a regular visitor she might get used to it. You deserve it. Please find a way.
 

jasmineflower

Registered User
Aug 27, 2012
335
0
Hi
Age UK provide a befriending service, I believe.

What worked for us was a private carer who was happy to be described as "the cleaner" (more acceptable than a "carer")who cleaned for an hour twice a week until she became a familiar face. Gradually she has helped to sort out food and fridge issues (subtely), dirty clothes problems and bed changing - all because she isn't a family member. We hit a brick wall every time we tried to do anything.
Obviously, you do have to find the right person. We have been very lucky. Sometimes she just goes in for an hour to sit and watch tv with my father in law to keep him company.
J xx
 

Julia B

Registered User
Apr 13, 2015
79
0
Thanks Quilty, took a few days off and saw how often she is utterly distraught at her own confusion, rang her CPN and explained this and the upshot is an increase in her antidepressant and her appointment at the memory clinic brought forward, so that should help we hope. Take care Quilty, thank you again x
 

Julia B

Registered User
Apr 13, 2015
79
0
Hi Jasmineflower, so glad that worked for you, thanks for the idea, it's a great one, will pop into AgeUK as it's near my office, I'm sure MIL would love more company sometimes, until then reading,watching TV or cooking/cleaning will have to be done in 15 minute intervals, that's as long as MIL can settle bless her...take care, J x
 

AngeMorange

Registered User
Dec 14, 2015
18
0
Northern Ireland
Do you have any day care provision in your area? My mum isn't quite as far on as your MIL but I'm looking into that for her a bit further down the line.

It could give your MIL a couple of hours out of the house and give you a break.

I know you aren't keen on respite, residential care etc but you also need to consider your own health. Carers can go downhill very quickly and become ill themselves if you don't get some breaks.
 

Julia B

Registered User
Apr 13, 2015
79
0
Hello Angemorange,

Thanks for your reply, yes there is a day care, and special cafes, but she won't go ( her knees, a cold, or just "no"). Terrible day yesterday, broke my heart when she said to hubby" well nobody told me you're my son"....after a whole day of questions - who lives here, whose dog/car/watch/ house is this, are you married to Jules - well nobody told me, I've already had dinner, the dog opens the patio door and eats the plants ( she doesn't). Lost glasses case ( in a shoe under towels under the bed)....No UTI, new dose of anti depressants coming soon...No chance of ten minutes sit down ( must wipe the kitchen units down as the "girls" leave the kitchen disgusting..tut tut tut...have a good weekend all, thanks Ange x