Someone to talk to

I am becoming increasingly worried about my mother who cares for my 67 step father. He suffered a stroke over a year and a half ago now and whilst physically he was unaffected in terms of paralysis his speech and language capabilities have been affected and have not improved at all.
He is able to speak, it is his understanding which has been totally affected. He has become verbally aggressive and constantly shouts at my mother. Everything is her fault. I understand he is frustrated, scared and probably feels alone but so does she.
His general health is poor and he has recently suffered another heart attack. He also suffers from breathing difficulties caused by emphysema. Fortunately the after care post his heart attack has been great and they receive regular home visits from a cardio nurse.
I'm saddened to say the after care since he suffered the stroke has been non-existent. We had brief contact with someone from this organisation who in the first instance was great but the follow up we were told to expect never happened and that is over a year and a half ago.
I will be calling the carers association and social services today as I really feel she needs some respite care.
What she really wants is someone to talk to who has been in her position and knows how she feels. She is not interested in coffee mornings or trips away for my step dad as she is able to take him out and about. She would like to be able to talk to other carers who feel the same way as she does, surely she's not unique in her feelings? Any help / guidance / support would be greatly appreciated.
Thanks in anticipation,
Danousia

Hello Danousia,

I don't know if the following is going to be helpful. I hope it is.

My wife and I are around 70. She had a huge left side bleed in 2006 and is still nearly aphasic, and paralysed down her right side. Quite early on, someone pointed me to a website called Waiting.com. I checked just now, and it has grown far too big to be useful, in my opinion. Then, it was just a few pages about how to cope in the early stages while the person was in a coma, and it was calming and encouraging.

Then someone lent/gave me a few books in 2007 on how the brain works and how it goes wrong. That was great for me while my wife was in hospital and a nursing home, because I could try to make sense of some bizarre symptoms, such as irrational crying when touched with a cold hand or lotion. She can't handle complex questions, because the organising and marshalling bit of her brain is affected. Sometimes, she just shuts down or says,"I don't know". She has a default response when lost, a very convincing "No", and you just have to learn how to ask questions to which the answer has to be Yes, or ask her politely "Please can you say Yes, just to prove you can, before I go on". Fortunately, she doesn't get angry, much.

The books didn't offer solutions, much, but reading them stopped some of the feelings of guilt I had. Sometimes, I could make constructive decisions, or change the situation I presented to my wife (for example, how to offer a choice of more than two options....which has to be done slowly, and in separated chunks). Does your father have any things that particularly annoy him (have you observed or has he said), which might be approached by changing that situation? Above all, try not to take the abuse at all personally, as it is coming out distorted from what he intends to say, or would intend if all the bits of his brain were talking properly to each other.

OK. The books, all paperbacks:
"A User's Guide to the Brain", John Ratey, Abacus.
"Mapping the Mind", Rita Carter, Phoenix.
"Phantoms in the Brain" Sandra Blakeslee and V.S. Ramachandran.
The last is, for my purposes, more useful than the later "The Tell-tale Brain" by Ramachandran.

If you or your mother find reading books helpful in solving problems, you might like to try these. They are not short or punchy.

Also, if I, with my very different stroke survivor, can offer any help by chatting, please let me know and we can exchange contact details.

Hugh

Hi Danousia - My husband had a stroke 3 year's ago and at the same time he sustained a fractured pelvis. He has always been a difficult person but it is worse now. He shouts and swears at me constantly and calls me every 10 minutes to do something for him. He asks me to change the tv channel but as soon as I do he changes it over again. If I take the changer away from him he calls me to change it again. We seem to be at each others throats from the moment he gets up until he goes to bed. I am 73 myself and do not feel that I can cope with his anger and verbal abuse much longer. I would willingly look after him as long as it takes if he were a nicer person or at least tried to help himself. Social services pay for him to go to a respite centre one day a week but he doesn't want to go and it is a fight to get him there, he would rather stay at home. I know I would feel a failure if he went into a care home but I feel it is my only option for my own health and sanity.

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