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Forums / Grief and loss / Grief for my previous way of life & loss of husband's health

Topic: Grief for my previous way of life & loss of husband's health

11 posts, 0 answered
  1. Elizabeth CP
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    23 March 2016
    There is usually sympathy given when someone loses a loved one but in my case my husband is still alive but we have lost the way of life we previously had. I have had to stop work to care for him. He is blind so going to a movie, playing card or board games no longer work. We used to enjoy camping, exploring & hiking but now I do all the driving, navigating , packing, setting up camp, cooking cleaning etc so going away is no long the relaxing holiday it was. When walking I am on alert for obstacles such as over hanging branches etc that his cane won't pick up & the more adventurous walks are too difficult to manage. Planning holidays results in disappointments because every one planned over the last 18mths has been foiled by illness or injury. i also miss having his support to do daily tasks Have others dealt with this.
  2. JessF
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    23 March 2016 in reply to Elizabeth CP
    Hello Elizabeth, I wonder whether as part of readjusting to this new way of life that you have to take time out for yourself.  Of course there is the grief of not being able to do things with your husband as you used to, but from what you're writing it sounds like you are feeling deprived not just of the companionship but in the loss of enjoyment over activities.  Is there any reason why you can't still do these things either on your own or with others?  Yes, it would require someone having to care for your husband in your absence, but everyone needs a break - especially carers - or we burn out.  Perhaps if you had even a few small windows that allowed you a life of your own, an identity of your own, outside of being a carer, it would make life as a carer easier?
  3. Missing user
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    23 March 2016 in reply to Elizabeth CP

    Hi Elizabeth.  When dealing with the grief of a lost loved one it is a very real & tangible thing & people can understand & respond very well.  You're in a situation of grieving also, but for something less tangible but equally as distressing - a lost lifestyle. People are lost / confused & dont know how to react or help you through this confusing situation.  You have had many changes recently, including giving up work to become a 24/7 carer. The ability to do things you both used to love - walking, camping, trekking, holidays away, driving - all recently lost to you.

    I dont believe I've asked you this before Elizabeth - how is your husband coping mentally with all this?  Does he receive any help from a mental health professional?  Of course he is having to deal equally (or more) with this massive change of lifestyle, as well as a total loss of independence.  From all I know of you both, he had been a very fit, active and independent man prior to all these recent health problems.

    I may seem to be getting off topic here, but I do believe it is relevant.  I was wondering if it would be feasible or helpful for the pair of you to have some form of joint counselling?  A counsellor may have some ideas of activities that you may still be able to do together.  And it could help both of you understand better what the other is going through.  You may both find it beneficial to each talk to somebody about all this.

    Another idea I had was the possibility of your husband being eligible for a guide/assistance dog.  I know he is physically very ill, but there are times that he'd be able to benefit from getting out and about and doing the odd walk, something from the 'old days' to brighten him up a bit, and in the process you also.  A guide dog would mean that you'd be able to relax a bit by not having to watch out for every little obstacle that may come along.  I think there is a wait list to get these valuable dogs, and a training period for man and dog, but it could be a real blessing for both of you if it was a possibility.  And even just in and around the house they can be a huge help to someone like your husband.  It could be worth making some enquiries?

    Please take your psych's advice & ENSURE you get away a few days each month. Being a full time carer is no easy task and you need to take better care of yourself.  You have a responsibility to yourself and hubby to do this.

    Sorry I cant help more, but its your usual "unsolvable" dilema.

    Take care.

    Sherie xx

  4. Elizabeth CP
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    23 March 2016 in reply to JessF
    Hi Jess, I sound like I am making excuses all the time. Prior to giving up work i had talked with my psych who advised me to find some activities/ groups to do once I stopped work. Unfortunately I broke my ankle so I was unable to drive for 6 weeks & then it took till a month ago to fully recover. January my husband was very ill & spent 10 days in hospital before being discharged for 2 weeks to recover enough so further surgery was safe. He improved for a month & then became seriously ill again for the last 2 weeks. This has made it difficult to focus on finding things I can do on my own which I enjoy. The last few weeks have left me extremely tired & unmotivated. I feel like my attempts to help myself all end in failure.
  5. Elizabeth CP
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    23 March 2016 in reply to Missing user
    Thank you for your reply Sherie, My husband has not had counselling for himself although he has met with my psychologist a couple of times. This was more for my benefit but was useful in helping us to understand each other's point of view & helped us with some strategies to deal with some of the problems we were experiencing. He has never really wanted counselling for himself. He has had assistance/training from Vision Australia. He has learnt to use a white cane & can use public transport. He attends a walking group & woodwork (through Vision Australia when well enough. These groups seem to be really good for him as it gives him a chance to socialise & a feeling of being able to do things he enjoys. When very sick he becomes very frustrated/ upset/angry feeling out of control & thinking that doctors don't understand or care. I end up having to act as go between trying to ensure staff understand his needs & also reassuring him when they are doing all they can but are at a loss to know how to really help. This is very stressful. He has said he doesn't want a dog at the moment. He feels he is a bit more free without a dog particularly going away (a cane is easier to take) This may be an excuse because I have never been comfortable around dogs but would be willing to have a guide dog if he wanted one.  I'm not sure how to arrange time to get away & will be a challenge finding things I want to do. I seem to have forgotten how to enjoy myself on my own
  6. Lost Girl
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    2696 posts
    27 March 2016 in reply to Elizabeth CP

    Hi Elizabeth,

    I used to volunteer for Vision Australia as an Audio Describer when I lived in Melbourne. I was trained to audio describe live theatre and tv shows, in particular I used to describe Blue Heelers. I would get a tape of the show a week before it aired and prepare the script and then would describe live on radio when it aired on tv. The audio describer provides descriptions of what can be seen and the non-verbal curs, for example "Sam is swimming freestyle in the pool. He finishes his lap and lifts himself out of yhe pool. Water drips off his body, he runs his fingers through his hair then picks up a blue and green beach towel and dries his face." The describers are trained to only include key information and it is timed to fit between the verbal dialogue so as to not interfere with the story. Your hubby would have a headset providing this and you would watch as normal.

    If you google "vision australia audio description" you will get some information on their sevices which include cinema, theatre, tv, books and art galleries just as an example. Perhaps you can do some of these things with hubby on his better days.

    You could even read the same book that hubby listens to and then you can have your own mini bookclub where you talk about it. You could even include some of your book reading friends and make a nice night of it.

    In addition why not ask them about games? I have a game at home called Mind Quest which are interesting riddles and puzzles you read out and the other player has to guess.  I know you would be reading all the time but I enjoy being the questioner so that may be an option.  It is good for keeping the mind active to. Good old 20 questions is another.  The games shops themselves may be able to help, like Games Paradise and Good Games. Good Games are very helpful but I am not sure what state you are in. 

    How about a spa resort where you can both be treated to massages, spas, swimming in a less crowded pool.  You could get pampered a bit. Very different from camping but relaxing at the moment might beca blessing.

    I will keep thinking of some ideas for you both. 

    It is such a big adjustment for you and any change in our lives is hard. You have a lot of support here. We care for you and will be here for you.

    Kind thoughts,

    Carol

  7. Elizabeth CP
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    28 March 2016 in reply to Lost Girl
    Thanks for your advice. I had heard of audio description but not for TV programs. I should have been making more effort to find things to help my husband but it became overwhelming with competing demands
  8. Lost Girl
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    2696 posts
    28 March 2016 in reply to Elizabeth CP

    Hi Elizabeth, 

    It's completely understandable.  You are going through so much and you are really doing an amazing job of it. It is a lot of change to cope with. There's no need to rush.

    I was happy to help. I really enjoyed the work I did for Vision Australia. I want to help support you and I enjoy researching things.

    Just remember even though you are the primary carer for hubby you are also going through a big adjustment and you need care too. You can get some emotional support from here but you still need down time for yourself. I am so glad you went camping. I know it would have been hard not having hubby there and I will take a guess that you probably felt a bit guilty.  That will get easier as time goes on.

     I hope you schedule in those breaks your psych recommended. You will be a better carer and a better wife by looking after yourself too.  

    It's good that hubby is feeling better. When you start feeling a little better look at having a chat to Vision Australia. They can be a great support to you too. It might help you feel happier when you see that there are things available to help with quality of life for both of you.

    Big hugs

    Carol xx

  9. Elizabeth CP
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    30 April 2016 in reply to Lost Girl

    I went away this week with my husband while he was well. After a series of failed attempts to go away together for a short holiday we made it as a trial t see what works for us.

    We stayed in a motel Monday night & had dinner out. I can't remember going out for dinner for ages. We went for a couple of walks on Monday & then went to the hot springs on Tuesday. This short break worked as it wasn't too far to drive & didn't require complicated directions so I could find my way. Going for one night limited the amount of packing & we booked only a few days before we left minimising the risk of having to cancel. Overall a good experience.

    Wednesday we drove to a national park where we did some bushwalks & camped. We hadn't camped together for over a year. We used to enjoy bushwalking & camping & my husband still wants to do it but we have been limited due to his health. The advantages were being able to go without booking allowing flexibility so we can go when he is well enough or cancel if required. We came home a day early because of the planned burns in the area. I become anxious around smoke & fire. We both enjoyed the walks but I missed the freedom to just enjoy the walk rather than having to guide my husband over the difficult terrain. He enjoyed the challenge but we were limited to shorter walks because it took so much concentration for him to make his way over rough rocks etc using his cane. I also found it stressful guiding him & being responsible for choosing walks which were interesting & challenging without overtiring him so he was at risk of injury or sickness. I also found doing all the driving, navigation as well as setting up camp & cooking etc tiring. It is something I need to do as it is important for my husband but I need to avoid trying to do too much. I miss being able to walk like we used to .

    I tried some respite a month ago but felt a bit funny being on my own.

    I'm still trying to work out what works for me.

  10. Lost Girl
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    2696 posts
    1 May 2016 in reply to Elizabeth CP

    Hi Elizabeth,

    It's been lovely to read of your time out and about with your hubby. I am pleased his health has been good enough for him to be able to go.

    It would be exhaustinhaving the responsibility for all the set up and navigation etc. Hard mentally too being a big change from what you are used to. How wonderful that you did it though, good on you!

    I expect it will be quite a period of adjustment and learning. I am ever so pleased to hear how much more positive you are now then you were just before your cruise. I hope you keep exploring new options too as well as how to adapt what you have always done.

    You are an amazing woman.

    Cheers,

    Carol

  11. Elizabeth CP
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    1 May 2016 in reply to Lost Girl
    Thank you Carol. I hope you start to improve soon too.

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