What aspects of caring cause you the most stress?

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hello  i care for my husband  who  has alzheimers.  he is also battling bowel cancer.  most of my stress is caused by not knowing what to do for him.for example  when he is in pain  or discomfort  am i supposed to ring the doctor  or is some of this discomfort due to the ops hes had  and am i being a nuisance by calling people

Hi Betty,

I care for my mum who is in year 16 Alzheimers.  I too get stressed by not knowing about pain etc.  I now go on non verbal signs from my mum ie  if she takes off her tshirt then i know she is getting a sweat rash, if she fiddles with her skirt i know she either needs the loo or has been to the loo, and as for pain, she is on aspirin 75mg but i also give her an efferfescent cocodamol in the morning (together with lactulose to ensure she doesnt get constipated) to relieve any hip joint pain she may be experiencing.  It is difficult to gauge and none of us want our loved ones to suffer pain as well as the disease itself, but you are not a nuisance to phone people, we all need support.  Would your husband recognise a drawn happy/sad face to help indicate pain?  Hugs

The most stress caused to me is the sheer responsibility 24 hours a day, seven days a week, of caring for my husband, who I love to bits and who multiple sclerosis and cannot do anything for himself.  I cannot do a single thing without first thinking of the impact on him.  If I feel ill I cannot just stay in bed, if something needs doing around the home in the way of maintenance I have to attend to it, if I want to go to the greenhouse I have to plan beforehand where he will be safe,  how he can summons me etc. All this as well as looking after our home and keeping it clean.   Sometimes I feel the weight so heavily and sometimes I can cope really well.  When I am not coping I am a wreck and the only emotional help I get is, ironically, from my husband who is like a tower of strength for me and does everything he can to minimise the impact on me!  We survive together.

I care for my severely disabled husband 24/7 - and in my opinion that's the easy part. What causes me stress is red tape and bureaucracy, lack of understanding from outsiders, lack of confidence in some medical professionals, and the frustrations caused by having to jump through one hoop after another - often to be told 'no' at the end of it! 

I care for a mother-in-law who has multiple conditions but the family around us always take her side and not see the impact on my life. I am expected to do everything with no complaints especially as English is not her first language and she rarely understands what the medical professionals say to her.

My major challenge is getting Health and Social Care to join up as her condition is deteriorating. Navigating the assessments and waiting for answers and not knowing what to do in the mean time. All this on top of the caring tasks.

I agree with both of the previous posters, both the lack of being able to have a moments peace and also dealing with authorities who seem hell bent on not being helpful.  My mother has vascular dementia, the sum total of what we were told about the condition was "It will get worse", the authorities attitude is "how much money have you got" when it should be you can have this, this and this but it will cost X number of pounds so how do we realise this?  When we have tried to find out what 'help' is available it always comes around to 'nothing available in your area, if only you lived in ..... then you could have.......', the postcode lottery at its finest.

 

The stress really became bad when mum had a shouting bout in the garden (no-one told us this could happen), it provided a lot af gossip and amusement for the neighbours, that evening 2 women stood on our drive ridiculing me. The nightmares continued with subsequent horrendous things happening at the hospital, we are frightened what will happen when she has to go back.  Meanwhile when she has a bad patch she shouts all night and part of the day, in between she is a nice person, that's the cruelty of the disease. 

 A nice lady from the social services had explained to her that Attendance Allowance was given to mum to pay for someone to help her, mum read that as 24/7 servants - me.  As for the general advice of rope in family, friends and neighbours to help share the burden, the person who thought that one up must a very lucky person to have people around them who are so wonderful, unfortunately we do not, people in our world have tunnel vision.  The stress builds and builds, it is unremitting 24/7.

Hi Jill,

Sounds like you have had a very tough time.

I hope that you can find some advise on this site and from the members of this forum which will help you find ways of managing the stress of your situation.

Best wishes,

Sam

Hi eveyone, i look after my son, who is now 30yrs old, who has complex learning difficulties, he cannot read or write, he has short term memory problems.  I think my stress is caused, like many, by the lack of support from health professionals.  My son is isolated, and spends most of his time either in his bedroom, or wandering round the shops looking for dvds. He has been accessed by social services, and they spend well over 6 months in doing so, only to be told that money was not available at this time, even though he was accessed as needing support.  He can be very withdrawn, and verbally abusive, and frustrated.  I have spent the last 25yrs looking for support for him, and if it is out there i have never found any.  He does not see himself as being any different from anyone else, and will not go to the special needs activities.  I do not know how he will cope when i am no longer around, and worry constantly about him and his future. Thanks for listening.  Regards  Pauline.

This one is particularly of interest to me.  My stress is caused by lack of knowledge and understanding of Mum's (aged 89) health issues.  Can someone direct me to information that could help?

Dianne.

Hi Diane,

There are lots of very experienced carers on this forum, so I am sure someone will have some useful advise for you. I am also putting together a page of useful links, which may also be helpful. I will let you know once these are up.

Thaks,

Sam

May I also reply to Pauline - Over the years I have found Carers Leeds (the Princess Trust for Carers) great for being advocates when dealing with social services.  For example, we needed a hospital referral to respite care but this got overlooked.  Carers Leeds stepped in.  They made telephone calls and arranged an appointment.  They would also have attended appointments if we wanted them.  Ok, I did not get the respite care but without support I would not have tried!

There may be a group near you.  Also, Citizens Advice may be able to assist?  Also, writing down your problems help.  You can then use your efforts to write letters to councillors or MPs.  You don't need to be rude or complain.  Saying you'll inform the media does not help either.  Tell them what your issue(s) is/are and ask them for assistance.  You can email them or use snail mail.  Regards Dianne

hi  hilary,  thanks for your reply,i have already noticed little things he does  like stroking his stomach and sitting with his head in his hands.he has miltiple problems so he is on a lot of meds,i would not give him anything unless it came from his gp.  its very difficult to get him to the gp  because of physical difficulties in both of us.He has had alzheimers for 12 yrs  and was diagnosed after a triple heart operation.This is the first time  ive spoken to anyone  but it has helped  thanks a lot xx

hilary blair said:

Hi Betty,

I care for my mum who is in year 16 Alzheimers.  I too get stressed by not knowing about pain etc.  I now go on non verbal signs from my mum ie  if she takes off her tshirt then i know she is getting a sweat rash, if she fiddles with her skirt i know she either needs the loo or has been to the loo, and as for pain, she is on aspirin 75mg but i also give her an efferfescent cocodamol in the morning (together with lactulose to ensure she doesnt get constipated) to relieve any hip joint pain she may be experiencing.  It is difficult to gauge and none of us want our loved ones to suffer pain as well as the disease itself, but you are not a nuisance to phone people, we all need support.  Would your husband recognise a drawn happy/sad face to help indicate pain?  Hugs

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