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

[Doolhof]

Hi Elizabeth,

Me again! I have just answered you on a different post. I see that you have explained even more here.

I am wondering if you have contacted your local council to see what help is available to you and your husband. Does your husband have assistance from The Blind Society at all?

Are there volunteer organisations in your region that may be able to help you with some of the home duties?

Maybe you could try contacting your local politician as well to see what help is available.

Could you even advertise for volunteer gardeners to help you? I had an elderly friend who could no longer look after her garden. After a few enquiries she had a guy take over the garden as he had no where to garden himself.

Are there facilities in your region where you as a carer can go and talk to other carers for advice and support?

I really do hope you are able to find some organisations and groups that can help you. Even enquire at the local Churches. They might not be able to help, but may know of people who can!

Hope some of this helps.

Cheers again from Dools

[Elizabeth CP]

Thanks Dools,

I will try to answer your questions. He is linked in to Vision Australia which is a great organization. They trained him to use a cane & manage public transport on his own although still difficult when going to unfamiliar places. I don't feel justified in getting help with housework. Sometimes my son mows the grass & does other jobs but he is busy with his own family and has tons of urgent jobs at his own place. The other children are too far away to help much. I feel bad having people help unless it is absolutely necessary like when I broke my ankle & couldn't walk. 

I asked the organisation which covers his type of illness to find someone in my position to talk to to find out what the future holds etc but there appears to be no one in Australia with his condition.

I guess I am looking more for emotional support so I don't feel such a failure for not coping

[pipsy]

Hi Elizabeth.  Not sure where you live, but I volunteer for a company who takes the elderly and people with your hubby's disabilities to Dr's, hospitals, also shopping if required.  I understand where you're coming from at not being happy asking for help for you.  Able Australia also has home visits for people so spouses can have 'time out' without feeling guilty.  With your hubby's disability our company would arrange for someone to help him going to Dr's, hospital etc, so you wouldn't have the same concerns.  We also have bus trips to various places of interest.  If you look under Able Australia, you may find an agency near you.  You haven't failed, just because you're asking for support.      

[Guest_1055]

Hello Elizabeth

I can relate to the feeling of feeling like a failure, but I think what I am just learning about this" failing" feeling is that it is the depression talking. That is all. We become clouded in it and can't see the truth. And sometimes I think we become too hard on ourselves or something as well. I don't fully understand all this yet myself, but I wanted to let you know you are not alone. And I care about you. Besides what I have slowly learnt about you, from conversing on other threads is that you take such good loving care of your dear hubby. For you to actually do that sounds pretty good to me. 

 With admiration and many hugs to you, if you want or need any.

Shelley xx

[blondguy]

Hi Elizabeth

Small world here..I just asked you how your husband is going..on another post....after reading about the hospital admissions.

I am caring for my mum who has just accepted home help...after approx 4 years....and I feel exactly the same as in a failure...Shell has hit this on the head...."Its the depression talking". I have siblings that didnt pick up that mum was in the early stages of dementia....or the incontinence...

I do feel for you and obviously your husbands' pain...You know this Elizabeth but I hope your husband will be okay with home help....Because your hubby and you need it......yesterday (hugs)

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

I Love your part of the country Elizabeth and what it has to offer the public....I am only guessing (sorry) but I think your level of 'Home Assist' would be excellent...compared to southern vic.

My mum was belligerent and not interested about home care...I think I am still paying for her being so damn stubborn.....but it worked. I do hope your husband 'may' even accept accept home help as well...If he doesnt just say its for you! 

"Other people seem to cope with larger loads"........Elizabeth....you (or me) are not 'other people' You are unwell...yes...same here. The "Other People" that have the larger loads could not achieve what you have with helping people like you have on BB. 

You are intelligent..articulate and you speak so kindly from your heart.....I have read many of your posts....I admire your sense of 'Clarity' and respect you more than know..Here for you x

Hugs for you Elizabeth....

Paul

[Elizabeth CP]

Paul, Thank you for your kind words. I hope you are managing with your mum. It would be very hard caring for someone with dementia & incontinence. I think it is harder than someone with physical difficulties because they don't realise the problem. I worked as a health professional and often referred people to get assistance such as home help, including persuading reluctant clients so I understand what is available in terms of physical assistance but at this time I don't think this is needed. I wish there was somewhere I could learn or get advise on some of the things my husband used to do I feel so incompetent changing a tap washer or other things go wrong. 

My husband is booked to go on a çamp'' in 6 weeks time with other people with related disabilities & carers provided to assist. This will give me a break. 

The real problems are things no one can assist. Like caring for him in the middle of the night when he starts coughing & choking. This happens on odd nights with no warning or trying to decide whether to encourage him to do something or whether to discourage him He doesn't want to be mollycoddled but doing too much & getting overtired leads to him becoming very unwell. I also feel a sense of loss because of the things we can no longer do. My psychologist wants me to do more on my own so I can benefit from respite rather than feeling lost particularly when he deteriorates further. I tried attending a Carers group but it wasn't good. Everyone else was really old and I had nothing in common with anyone so I gave up.

I appreciate the suggestions and having people show they care by responding helps

Thank you all

[pipsy]

Dear Elizabeth.  I'm wondering from reading your post if your hubby is in the early stages of cancer, with the coughing and choking.  Would putting several pillows under him help him into a 'sitting up' position.  Sometimes when we lie down and start coughing, sitting up seems to ease the situation.  I suppose this camp has given you details about what to provide for your hubby, extra pillows, warm p.j's etc.  Instead of attending a carers group, have you considered anything else?  If you could arrange a qualified carer to sit with your hubby could you then arrange an outing for yourself with friends?  Maybe while he's away with this camp, you could visit your G.P and get some advise about 'time out' for you.  I don't mean respite as such, but you need to recharge your own batteries so you do need help.  I feel you would qualify for 'home help'.  Don't ever feel you've failed because you need help.  You've been on your own for so long a bit of help would be beneficial for you as well as your hubby.   maybe someone reading this might know of another way you could get the help you need.    

[Elizabeth CP]

Thanks Pipsy, He doesn't have cancer, Last year I applied for a hospital style bed which is a godsend as the bed can be adjusted so he can sit upright if required. Sometimes when the coughing starts he is so distressed he doesn't think clearly and can't talk so I have to adjust the bed as best as I can to suit him. It is a lot easier than using pillows etc. His facial muscles & those controlling swallowing & digestion. When well he can eat OK providing he takes the medication required to assist the muscles & uses strategies he has learnt. When unwell he is fed by tube. His condition is very rare so I have had problems even in hospital helping people understand his needs. We now have a print out from his GP we supply so people will believe us.  

[Guest_1055]

Hello Elizabeth

I was thinking about you just now, and I was wondering if you are going through the grieving stages. It is just you used to do  certain things with your hubby, but now perhaps you are unable to do those things or something.  Anyway I was just throwing it out there, you may have already had those thoughts.

Shelley xxx