help I am going mad

[Margarita]

When I first got my lap top, my mother use to say what are you doing? I would say it was something related to my mother , like a story about a lady who does not like to wash herself , hint hint , time went on then it would relate to an issue I was having with my mother , my mother would answer ok .

My mother like the TV on 24/7 , my mother bed is in our fount room, so the TV gets on my nerves as I like the sound of relaxing music , or just the sound of silent . so when my daughter want to use the internet I escape into my bedroom , while my daughter sit with my mother

 

[Jane1]

it helps to talk

We have sundowning and pacing , have we got humming to come. I am 40 and find my MP3 player a godsend even if i only listen through 1 headphone!!
The best of us can have patience but it does wear thin, that's only human.

 

[TinaT]

Hello Gerry

Ken my husband also has started to hum to himself. He is displaying other new symptoms such as sucking two fingers or constantly putting his thumb sideways in his mouth and chewing on it. I hate myself most of the time. I hate myself for not having sufficient patience. I hate myself because shouting at him doesn't relieve me. It just makes me feel such a bad, bad person. I know it is his illness and not really him who is driving me crazy. As more and more uncontrollable behaviour is surfacing I am actually shouting less and less as it is finally becoming obvious to me that he doesn't want to behave in such crazy ways and no amount of shouting is going to stop him.
I think you need to get in touch with either your social worker (if you have one) or the social services run by your local council. Whatever help you are currently getting needs to be re-assessed as you now need more from them. I also think if you have a hospital specialist you should phone his/her secretary and try to make an urgent appointment for medicine to be reappraised. It is possible to adjust your wife's medication so that you both have a little more peace. I know you are suffering but I also know that she is suffering. If medication can help you both, then so be it.
It is such a terrible illness and causes us so much pain and guilt. Please don't think you are alone. On TP we are all rowing our little boats in the same turbulent, terrifying sea.

Love TinaT

 

[TinaT]

... hostile to help

p.s. to my last post.
Just noticed that you said your wife refuses help. We have had wonderful support from my social worker. A few months ago she arranged for me to get direct payments for 10 hours each week and for Ken to go to a day care on Saturdays and Sundays. Ken hates having the carer in our home and hates the day care centre. I have to be very strong and not give in to him. When the carer first started coming I left the house immediately he arrived (my carer is male). I stayed away until the last half hour which I then spent chatting with the carer discussing how he had been able to cope with Ken and generally trying to support his efforts. Now I am able to stay in bed one or two mornings whilst the carer washes and dresses Ken. This is so valuable to me, especially as I have often had disturbed sleep the night before. At weekends when he goes to the day care I have to tell him that he must go as I will have a breakdown and he will have to go into a residential home if get sick. Horrible thing to tell him but it is the truth. We sometimes arrive at day care centre so late because of his hostility that it doesn't seem worth the effort for the short time he is there. I make this huge effort to get him there as the staff tell me he settles down once he arrives.

I don't know if my story helps you. I have had to be so hard and seemingly uncaring because I think this new routine will, in the long term benefit us both.
Best wishes TinaT

 

[Margarita]

TinaT

My sentiments also .

have had to be so hard and seemingly uncaring because I think this new routine will, in the long term benefit us both

As its also help me in the long term , with the care of my mother at home .

I am glad you said this

Now I am able to stay in bed one or two mornings whilst the carer washes and dresses Ken. This is so valuable to me, especially as I have often had disturbed sleep the night before

As I can no get over feeling guilt also embarrassing for staying in bed and the career seeing me like that, so I end up still getting up and helping , do you give the carer a key to get in I’ve never had domestic help coming in , in the past so find it all a bit embarrassing , it you please don't mind me asking how do you get around that