topic Caring for husband with chronic illness & blindness How to cope in Relationship and family issues

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Sun, 14 Feb 2016 04:00:29 GMT

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

Caring for husband with chronic illness & blindness How to cope

Doolhof — Sun, 14 Feb 2016 04:35:56 GMT

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

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Sun, 14 Feb 2016 05:48:32 GMT

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

Caring for husband with chronic illness & blindness How to cope

pipsy — Sun, 14 Feb 2016 06:45:50 GMT

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.

Caring for husband with chronic illness & blindness How to cope

Guest_1055 — Sun, 14 Feb 2016 07:19:14 GMT

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

Caring for husband with chronic illness & blindness How to cope

blondguy — Sun, 14 Feb 2016 09:22:57 GMT

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

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Sun, 14 Feb 2016 10:25:10 GMT

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

Caring for husband with chronic illness & blindness How to cope

pipsy — Mon, 15 Feb 2016 07:25:35 GMT

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.

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Mon, 15 Feb 2016 07:40:53 GMT

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.

Caring for husband with chronic illness & blindness How to cope

Guest_1055 — Mon, 15 Feb 2016 08:15:53 GMT

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

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Mon, 15 Feb 2016 09:02:33 GMT

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.

Caring for husband with chronic illness & blindness How to cope

pipsy — Mon, 15 Feb 2016 10:52:26 GMT

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.

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Wed, 17 Feb 2016 09:16:40 GMT

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.

Caring for husband with chronic illness & blindness How to cope

pipsy — Wed, 17 Feb 2016 11:15:06 GMT

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.

Caring for husband with chronic illness & blindness How to cope

blondguy — Wed, 17 Feb 2016 11:35:34 GMT

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 🙂

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Wed, 17 Feb 2016 21:41:30 GMT

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

Caring for husband with chronic illness & blindness How to cope

pipsy — Thu, 18 Feb 2016 08:12:50 GMT

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.

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Thu, 18 Feb 2016 20:44:07 GMT

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

Caring for husband with chronic illness & blindness How to cope

Elizabeth CP — Sat, 12 Mar 2016 11:01:06 GMT

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.