Dont know what to do
Posted , 3 users are following.
My sister was diagnosed with Epilepsy 12 years ago, over the last 12 years her health has seriously detierierated. She was diagnosed with ME, Fibromyalgia, Lupus amongst a range of things. Her epilepsy is supposidly under control now. I have seen her suffer pysically for years but her mental state seems to be driving all her ailments and gathering more by the week.
She is completely housebound and spends most of her time in bed. She has turned her night into day. She is constantly on facebook where she has any amount of friends that she met online but through M,E help groups or fibroymialgia groups etc. She has completely isolated herself from the outside world with maybe one or two friends who will call now and again. When she wants to, she will get dressed and engage with people and seem normal but that is quite rare these days.
Speaking to her, she is completely in the past and will talk about things that i dont think she could possibly remember as if they were yesterday.
She tells any amount of lies and im sure that she believes them herself.
Her room is dark and completely full of crap even with most of her bed covered in things.
She doesnt seem depressed/sad, she talks about her online friends very enthusiastically and is very cherpy. As i said when she wants to engage with people she puts on quite a show.
Her pysical illnesses are the reason for everything but she is 100% dependent on my parents for every need she has except for showering and im not sure she showers often any more.
As its Christmas, i have spent quite a bit of time in the house now whilst she is in bed. I cant make sense of the situation but i know it is killing my parents and i see it getting worse and the years go on. She has recently changed her antidepressant and when i ask her about it, she says it is purely for pain management for her Fibromyalgia.
When emotional or mental health is mentioned she will fight tooth and nail and say she has been to neurologists and psychiatrists and counsellors for years(which she was at briefly) and that she does not need any of it.
When is enough enough, when does care need to be forced? I have seen the time go by and things get worse and worse.
I have been supportive, kind, screamed, cried, begged etc all at different times and nothing seems to work. She even has a self made baracade outside her room so no one can disturb her.
Can anyone give me some insight to what is going on here or what can be done?
Her doctor wont speak to us or share. Five years ago, he suggested residential care to help her get to grips with her life and it was refused
1 like, 3 replies
mary14467
Posted
kelly8973 mary14467
Posted
I feel heart sorry for you're parents
I too had m.e 6 years ago and had to give up work for 18 months I have 3 teenage boys but they went that old then. My mother was my rock but I still lived in my own house with the boys. It brought on depression and I spent a lot of time in bed. This year I lost my mum suddenly and my depression has come back terribly. Your sister although she has all the physical illness seems to just take for granted your parents doing everything and will probably continue to do so unless they just stop doing it forcing her to at least try. Some days I can barely brush my hair but I know I have to get up as I have no one else. It's a vicious circle as I'm not sure you can force care or get it unless she is a threat to herself etc
Lots of love x
nalia mary14467
Posted
Hopefully she will venture out soon. Replication of natural healing energy, may be a start...by making sure she has access to fresh air and sensory positives - like relaxation videos that show natural scenery, calming music, beneficial aromas etc. Good balanced nutrition and hydration would also be a good place to focus.
It sounds like your sister has developed a sleeping disorder. She may need a clinic to support her in addressing this. It takes a long time to manage successfully sometimes, but gradually cutting down on computer usage at night and many other points should help.
From a proactive stance, perhaps she could try to do things that she finds challenging, intersperesed with things that she likes and varying activities. To break the cycles of negativity and harness easier energy flow.
Online support groups can be great, but can never replace face to face socialisation. I wonder if becoming so isolated, could indicate Agoraphobia. Your sister clearly has complex health needs. It's good that she still see's people that come round. Maybe animal therapy would help too.
I am sure that it is not for want of trying, that your sister mainly cannot "cope" with being more active. Hidden disabilities are very gruelling and frustrating for sufferer and family and friends etc. Perhaps a personal flexible health management plan would aid your sisters recovery and avoid as many relapses.
I guess that peoples memory recall differs and perhaps she is ruminating a lot about the past, becuase she feels trapped. She sounds like she needs attention because she is scared and lonely and this often come out as anger and passive aggression also. I am sure, that often a fantasy world seems preferable because of the strain she is under.
Your sister may have developed environmental sensitivity and therefore gradual exposure to ight may be needed and someone to sensitively help her to brighten her room and organise it etc. Perhaps she feels that she has to put on a show to protect herself and keep hoping. I am sure that this is a sign of feeling insecure and experinecing great instability.
A personal care diary could help, where showering is alternated with other ways of washing etc. I hope that she can with help; develop and maintain a bigger support network and try to get her independence back. A big challenge.
I am sure that your parents could do with support too. There are Carers networks and maybe: with comprimise and negotiation they could establish their needs for self care patterns and communicate with your sister about this. It can be difficult when resources run low in terms of human energy and then conflicts of needs arise. Maybe visulaisation could compliment other measures so that even though things will undulate, positives can be seen too. Reframing challenges into solutions.
Often anitdepressants can mask underlying agony. Perhaps a different approach is needed. Holistic therapies for instance. Maybe focusing on welfare points may help your sister to see how much care she needs and if she wants to manage this herself, she could find ways to creatively self-care that would supplement and cover her many requirements. This could be built up in stages and have alternatives listed/on hand, for the more difficult days.
Personal targets are often helpful...as long as they are evaluated without blame or admonishment i.e. if things seems too painful then change strategy, on the flip-side remembering to be openminded about what can be achieved and trying new things is key. As is supporting and resourcing what works for individuals and how this can be kept going when people and their circumstances change.
She sounds vulnerable, even though you have tried a number of ways to help her. I would suggest that even though ranges of emotions are understandable, that a calm, assertive, cognitive approach is best. Where self evaluation and consultation is key. Then appraisal avoids becoming biased. Limitations then become possibilities.
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