Caring for husband with chronic illness & blindness How to cope

[Elizabeth CP]

I am unsure if this is the correct forum to post on.

I resigned from work last October after struggling to cope with part time work, and assisting my husband who had several stints in hospital and numerous specialists visits and I was exhausted which combined with stress exacerbated my depression. When he is well he is fairly independent providing I keep everything in the right place so he can find it. Unfortunately he can no longer help with the tasks he used to do like driving, mowing, gardening & home maintenance leaving a much greater load on me. When unwell the situation becomes physically & emotionally demanding. Other people seem to cope with much larger loads than me.

Just wondering if there any others in a similar situation to bounce ideas and support each other

[Elizabeth CP]

You are right Shelley. The life we thought we would have has gone. It is hard for others to understand as they see him when he is well so believe he is doing well. When unwell he is @ home or hospital so friends & relatives don't see him.  

[pipsy]

Hi Elizabeth.  I feel so sorry for you at this time.  I suppose well-meaning friends tell you to call them if you need them, but when you do they're busy and don't 'hear' your cry for help.  From your friends point of view though, sometimes it's hard to know what to say.  We always are fearful of saying the wrong thing, or what we do say comes out wrong.  When my neighbour's hubby was dying a few years ago (he has since passed), I wanted to call in, but didn't honestly know what to say.  Perhaps next time your hubby is unwell, you could ask some of your friends to call in, saying the company would 'buck' him up.  Once your friends see for themselves that he's not so good, but their company has made him feel better, it might make it easier on them and you.  Try to encourage them to visit, even if it's only for a couple of minutes.  The more emotional support you get, the better for both of you.  Hubby probably would welcome visits.  Once he gets over the initial embarrassment at people seeing him when he's not feeling so great.  If they don't treat him any differently, just talk to him about everyday occurrences, this probably would benefit him.  You would need to educate them a bit to prepare them.  The bed you have sounds perfect.         

[Elizabeth CP]

Thank you for this answer. I missed it initially & then when I read it I felt like crying because you have addressed the real issue. Unfortunately I don't have people who I can rely on. My brother will visit when he can but he isn't always available & has a lot of other commitments. His wife is always 'too busy' to visit me any more. My husband's family either live too far away or don't bother. One brother will ring him but he lives interstate. We have some really good friends but they live 2 hours away. I have one son who lives close & will provide practical support if enquired but isn't so good with emotional support. My daughters are great but live too far away  to drop in for a short visit when i need it. I've been too busy trying to care for children & my mum & now my husband to make good friends & we had to move due to my husband's condition which hasn't helped.   

[pipsy]

Hi Elizabeth.  I really feel for you.  Getting back to my suggestion before about Able Australia, we can arrange 'home visits', the person visiting would be there when you need to go out.  There's also 'Anglicare'.  Both organizations would be able to asses your needs, your hubby's needs, whether he needs assistance feeding.  Through Able, you could also get shopping assistance (if required), otherwise we just collect you, then take you and your shopping home.  Able also takes your shopping inside for you.  Please, don't be shy about asking for help.  Maybe also through the hospital your husband attends when necessary, you would qualify for assistance.  You are a carer, but you need help too.  When does you hubby go on his camp?  Perhaps while he's away, you could make enquires about help.  Perhaps your G.P might be able to assist.     

[blondguy]

Hi Elizabeth'

I understand that Pipsy has a lot to offer.....(sorry just trying to avoid twin posts)....You are obviously well aware that you can have 'home help'...we chatted about this a couple of days ago.

I posted "I didnt know that Pipsy was a volunteer!...but the in home help will not only assist your husband but his carer...his wife.."

I am sorry that you have been reminded 'again' now as per home help....Pipsy has a heart of gold but doesnt cross check her input against previous posts.

I posted on another page that your daughter is a 'Gem'....

I just wanted to see if you were going okay Elizabeth

Kind Thoughts

Paul 🙂

[Elizabeth CP]

Thank you Pipsy & Paul for your kind posts. My plan while my husband is away is to relax. I guess my challenge to make sure this happens. It is my son's birthday so I just rang him on skype. He lives in UK. We had an amusing call as he likes to stir me. I am going to visit friends in Phillip Island tomorrow for a few days. This will give me a needed break

[pipsy]

Hi,  I hope you really enjoy your much needed break.  It's great you called your son, you have a lot of positive things happening at the moment.  As far as reminding you about 'home help'.  All I was trying to do was letting you know that the help was available.  I don't need re-reading my posts, to remember what I've said.  Sometimes with my clients they will ask me to repeat something I may have told them because they need to be reminded how to ask for help.  When you have a lot going on, you sometimes forget little things you have been told, therefore you ask again.   A lot of my clients have problems knowing how to ask because a rebuff puts them off.   

[Elizabeth CP]

Thanks Pipsey, Unfortunately the trip to Phillip Island has been postponed for a week. 

[Elizabeth CP]

I am not coping at the moment. My husband is very unwell so I can't sleep at night because of him coughing & worrying about the risk of him deteriorating further due to aspirating (from him regurgitating & it going into his lungs) & increased weakness due to lack of sufficient food or drink. Unfortunately both these are very real concerns as they have occurred in the past.  His Gp recommended hospital emergency if he deteriorates further as he can't do any more for him but there is no point in going before he really needs to go because sitting waiting to be seen is not helpful for him & they can't do much.

Being sleep deprived means i can't get much done so the two combined  with worry re situation affect my mood. I don't need physical assistance it is the worry & tiredness that is bad & no one can fix that. I feel that everything I have tried to do to help improve myself has gone down the drain.