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God only visited for one day..........

keegan2

Registered User
Jan 11, 2015
190
Well even I know God must be very busy but one day was not enough (I know I am being greedy). Yesterday we were back to our old ways wandering being suspicious refusing to go up to bed the whole day was tiring. Then this morning big tantrum with tears refusing to let anyone near refusing breakfast meds or anything. Two hours in just managed to calm him give him his medicine and breakfast looking forward to a stressful day. Thankfully managed to get little one to school without him noticing to much was going on................
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,100
Kent
We are not allowed to breathe easy keegan. It is a day by day illness. All we can do is be thankful for the good days and if the bad days are too frequent, ask for help.
 

keegan2

Registered User
Jan 11, 2015
190
I am asking for help. The occupational therapist came last week and this Thursday the nurse allocated by the memory clinic is coming. Its so hard O/H refuses outside help and gets very agitated when someone comes around asking questions he thinks we are plotting something against him. We want to help him ourselves and keep him at home as long as possible the decline just seems so quick maybe the medicine just needs longer to stabilize things I don't know. Can things improve? Is it possible to have such bad weeks for some good ones to come I don't know the answer has anyone seen an improvement after such a bad couple of weeks...............I hope so. This forum is the only place I can vent my thoughts with some answers to my questions...
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
I am asking for help. The occupational therapist came last week and this Thursday the nurse allocated by the memory clinic is coming. Its so hard O/H refuses outside help and gets very agitated when someone comes around asking questions he thinks we are plotting something against him. We want to help him ourselves and keep him at home as long as possible the decline just seems so quick maybe the medicine just needs longer to stabilize things I don't know. Can things improve? Is it possible to have such bad weeks for some good ones to come I don't know the answer has anyone seen an improvement after such a bad couple of weeks...............I hope so. This forum is the only place I can vent my thoughts with some answers to my questions...
It's good that you're sharing your thoughts here with us all, as everyone understands. I found it crass, insensitive and thoughtless that "professionals" would ask questions in front of John, that I would try to answer truthfully, sometimes in a sort of code, knowing I was distressing him - and there'd be hell to pay when they'd gone.

So, after a while, I decided to type up a "To Whom It May Concern" statement, which I updated regularly, and I would give this to the SW, nurse, GP etc, before they had a chance to ask me anything.

If they were visiting us at home, I'd invite them to sit down, whilst I made the coffee, give them the Statement, and then ask John to "help" me. He'd spend a good 5 minutes with me in the kitchen, arranging biscuits on a plate, which gave the person time to read through.

If we had to go elsewhere, I'd give the Statement to the receptionist, and ask that it be given to XYZ to read, before we went in. You're doing a brilliant job, Sweetie xxxx
 

usedup

Registered User
Aug 5, 2014
21
West Berkshire
Rather like you.

I am asking for help. The occupational therapist came last week and this Thursday the nurse allocated by the memory clinic is coming. Its so hard O/H refuses outside help and gets very agitated when someone comes around asking questions he thinks we are plotting something against him. We want to help him ourselves and keep him at home as long as possible the decline just seems so quick maybe the medicine just needs longer to stabilize things I don't know. Can things improve? Is it possible to have such bad weeks for some good ones to come I don't know the answer has anyone seen an improvement after such a bad couple of weeks...............I hope so. This forum is the only place I can vent my thoughts with some answers to my questions...
I have similar problems with my wife. The well-intentioned people who come round do sometimes cause distress because my wife does not know who they are or why they come, and feels threatened. Today two helpers called and she disappeared into the bedroom. You ask if things can improve. My understanding of the illness is that they won't. So is there any comfort? Well, we all get a bit better each day at coping and you may find that in a few weeks time you can manage an event that, today, would drive you round the bend. And it may be some comfort to feel, when it is all over, that you did everything you could. My day, this Tuesday, featured three walk-outs in search of long dead parents. So far I have always been able to overtake her and persuade her to return, but it is stressful to be thinking "Will it work this time?" The last time we half way between Newbury and Andover (where she once lived) before she accepted that having no address and no telephone number rather scuppered the project. Tomorrow I have booked a delivery from Sainsburys and am wondering "Will I be here to take it or will I be miles away acting like a sheep dog?" There can be small good moments. She is a very poor eater, but did very well today with an oversize bacon sandwich (it looked awful) but inspired her to say that she really enjoyed it.
 

Mannie

Registered User
Mar 13, 2014
116
Bracknell area
For these type of behaviours, my recommendation would be to call their community psychiatric nurse and ask for a visit to help on how to reduce the problem It may be caused by be use they are not busy with activities that work for them ,or they need more physical activity . Or it could be depression or anxiety.


As others have said , request help that you are entitled to, from the professionals, and keep them involved until they have resolved it. They should be creating a care plan .if a plan does not work then involve them again to get alternatives.

Hop this helps
 

esmeralda

Registered User
Nov 27, 2014
3,074
Devon
Just sending you a big hug Keegan, I really feel for you trying to look after your husband while making life as normal as possible for your little boy, you are amazing.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

keegan2

Registered User
Jan 11, 2015
190
Thanks for your kind words. When you close your doors you feel you are the only one going through this whereas in reality I am not alone (not that that makes me feel any better) I lost my dad when I was 3 and my mother at the age of 40. Today I feel like a little kid who needs guidance from my elders even though I am 51. This is a big world and I am only a little person with another little person to look after. I know I am not alone and one day I want to make sure I can help other people who may not have anyone in there lives to help them not face such a terrible thing on their own. Virtual hugs are appreciated and sent back with extra squeeze..........
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,049
Yorkshire
Hi keegan2
somehow no matter how old we are we still have those 'I want my mum' moments - and you yourself are being such a wonderful mum to your son
at least TP is here for us - lots of mothers and fathers to turn to
and please know that by posting here for so many to read and recognise your experiences you are already helping give comfort and confidence
so keep posting
best wishes