wings and things

A caregiver’s perspective

on January 8, 2014

The term ‘caregiver’ is relatively new to me and I am not quite comfortable with it because it has always seemed so weird when various professionals (doctors, nurses, nursing home staff, receptionists) have asked me if I am the caregiver/carer. Whenever this question was asked in front of Anthony, over the many years of his various illnesses, I always used to say, “No, I am his wife.” The caregiver/carer identity always seemed somehow insulting to him so I found it hard to accept.

I had to accept this new facet of my identity of course because eventually I had to apply for a ‘Carer’s allowance’ so I could get paid a little bit of money to make up for all the leave I was taking from my job at the university. This was because it became more and more apparent that I could not leave Anthony alone as he was prone to falling over, nobody could get the Parkinson’s medications quite right (a common dilemma), and sometimes Silver Chain staff couldn’t come when I needed to go to work. After two years of this tenuous situation it all culminated in my resignation, Anthony’s admission to a nursing home and Ming’s first scoliosis surgery.

This was around the time I began this blog and, even though I know I can go back and look at what I posted during these difficult times, I don’t want to until my own memory of putting my beautiful husband in a nursing home kicks in. Of course I remember the trauma of this happening and Ming’s impending surgery but I don’t remember a lot of what happened between then and now.

Now, I only know the joys and anxieties of each single day; today I brought Ants home for awhile, then took him to lunch at my mother’s, then took him back to the nursing home where ‘goodbye’ was fine because he knows he will see me tomorrow. Ming can’t understand why I go in almost every day now when I didn’t used to and he even gets a bit jealous, so I have to be quite careful to divide my enormous love for both of them evenly – ha!

I used to see people wheel-chairing their loved ones around supermarkets or down the street and I would think, oh how can they bear it? Maybe, when people see me (still relatively young), wheeling Ants into a cafe or shop, they think the same. I don’t know. But for the moment I actually find these outings great fun even though it probably looks like an OMG-how-ghastly-for-her situation.

Today, on the way back to the nursing home, I stopped at the grocery shop and left Ants in the car (too hard to get him out and back in again) and as I approached the car with the groceries, I saw him smile a little bit.

Once I got back into the car, I knew it would only be a few minutes before I would have to leave him at the nursing home and say goodbye and I was feeling a bit crappy until Anthony said, “You really are very beautiful, Jules.”

The caregiver/carer role can sometimes be reversed in such a way that is SMACKS you in the face and makes you glad, makes you think, makes you wonder. Thanks Ants – you made my day!

60 responses to “A caregiver’s perspective

  1. May Ants continue to surprise you in these blessed ways.

  2. Beautiful love, even when it’s difficult. Anthony made me smile! He’s my favorite today. πŸ™‚

  3. bulldog says:

    Great post.. and who gives a damn what others are thinking.. you are with the man you love and who loves you…

  4. Vicki (from Victoria A Photography) says:

    I agree with bulldog – who gives a damn.

    Being with the one you love makes it all worthwhile. Vicki xox

  5. gardengirl92 says:

    They’ve pretty much said it all, but keep enjoying your man and be grateful for every day you have with him. It may sometimes be hard for Ming now, but he is learning a good lesson of love from you. Blessings.

  6. Helen says:

    That’s just lovely Julie xx

  7. You REALLY are beautiful Julie – inside and out!
    Diana xo

  8. Your writing holds lessons for everyone. Thanks for being so brave in sharing.

  9. Even though you find it a bit much to be called a caregiver when you think about that word … ‘you certainly do care’… and ‘you certainly give’ so much of yourself…. so it does ‘fit’… Diane

  10. viveka says:

    I’m all with Bulldog … can’t put it better myself. You look after yourself first … Jules, I think you’re beautiful too … both on inside and outside.

  11. FlaHam says:

    Julies, Big smile, you didn’t think Ants latched on to you all those years ago, because knew you were a smart, intelligent and friendly lady did you???? Hell no he didn’t!! He it because besides all that YOU ARE INDEED BEAUTIFUL both inside and out. That’s why, oh yeah, it didn’t hurt at all that he loved you heart and soul. Julie, as you know I have hung on every word you have said for over a year, and the one thing that has always been abundently clear is the love you share with Ants. We should all be that lucky. And it doesn’t hurt your easy on the eye. Take care Bill, xoxo

    • jmgoyder says:

      Yesterday I went to the post office and opened my little box and there it was – your green-enveloped Christmas card! Thank you so much, Bill and Steph – I will keep it in a safe place to look at when I want to grin my head off! Love it and really appreciate your kind words and thoughts. Juliexxxx

  12. The caregiver role. One facet, one label, under the umbrella of The human role. We sure do like to pick and chose our labels. But, what does any of it matter in the eyes of love. Reading you is reading love. Your friend, Paulette

  13. Don’t forget to take care of the caregiver too.

  14. Terry says:

    What a beautiful love story. I truly felt blessed reading this

  15. janeslog says:

    I never realised how hard it was to wheel someone around in a wheelchair until a few years ago when I helped a friend take her granny out to the shops. Getting up and down kerbs was a nightmare and we had to take detours to find dropped kerbs so we could get around.

    Crowded shops are a nightmare to get round and there are hardly any disabled parking spaces.

    Now when we take her to the shops we hire these electric wheelchairs in the shopping centre. They are free, but you pay a security deposit and then get it back when you return the wheelchair. She is loving her new ‘wheels’ and quite happily drives it along with us following behind.

    • jmgoyder says:

      I have contemplated getting one of those motorized wheelchairs but Ants wouldn’t be able to operate it (he gets very confused when it comes to phones, television controllers etc.) I am becoming an expert at finding places we can go that have wheelchair access and yes it is heavy work pushing but good exercise ha!

      • janeslog says:

        It’s quite easy to operate. Do they not have them in the local supermarkets and shopping centres?

        My local Asda store has them. You ask customer services for the key, the man shows you how to use it and away you go!

        You should see if you can try one round the shops first to see how Ants gets on.

  16. ksbeth says:

    what a great attitude and it’s clear how you’ve grown as your role has changed and grown.

    • jmgoyder says:

      It’s now nearly two years since Ants went into the nursing home but he has finally accepted this and it is much easier for both of us now, thank goodness!

  17. Anthony knows how to make your day, isn’t it wonderful. πŸ˜€ I completely relate to the “jealousy” over you between Ming and Anthony, I know that in your case, it’s from Ming, (in my case it’s my hubby who gets jealous of the babies still sometimes), but you are still the center of your boys’ universe and it’s nice. πŸ™‚

  18. Lovely post.
    It is hard to accept the role of ‘carer’ over ‘wife’ and I do not think that the wife role ever fades away.

    • jmgoyder says:

      I used to get startled at the question ‘are you his carer?’ but as I have also often been asked if I am his daughter, I’ll take carer any day lol!

  19. lensgirl53 says:

    You really ARE beautiful, Jules. You are making me cry. You are a blessing and Ants knows it…just like me. xo dale

    • jmgoyder says:

      I think we are very lucky – I think I went through a phase, just after Ants was admitted to the nursing home, where I didn’t want to see him because it was such a painful transition, but now that we have both accepted things, it’s actually quite easy to enjoy things again if that makes sense.

  20. lensgirl53 says:

    I meant to say you are a blessing and both Ants and I know it. What I posted sounded like I was calling myself a blessing…LOL

  21. When my dad was diagnosed with cancer and mum was told to apply for a carers allowance to get a bit extra money it felt wrong to her, (she did it ) but it didn’t sit easy with her she is his wife not his carer but she said the extra money was nice. Dad is forever telling her now if he gets to hard to handle to put him in a nursing home, which mum doesn’t understand as he is no where near that stage of life. Anthony knows how amazing you are and he is blessed to have you.

  22. cecilia says:

    Such a wonderful woman you are and Ants is such a wonderful man.. still in there he is.. c

  23. Trisha says:

    Awww, I love how he made your day today. Brought tears to my eyes!

  24. Your blogging the experiences, the tribulations, the trials, and oh so much ALL the love you and your two men share always warms my heart and soul Jules.
    You took to sharing things with us that have great significance in our own journey’s allowing for many of us to process our own lives with things you say that resonate so deeply.
    I don’t know that I have ever said how much you sharing your life with us means to me. So I hope I have now done so.
    I absolutely love, love love the way you & your Anthony love. You both make me smile at my 5am. The first for the day. How lovely.

  25. Lynda says:

    Julie, you have endeared yourself to our hearts through the sharing of your life.

    I’m glad that Anthony was able to express himself to you.

  26. tersiaburger says:

    You are beautiful, articulate and a loyal friend!

  27. Rhonda says:

    Oh, I love this…and what a way to be gently reminded that not only is he ‘still there’, but still your guy! xoxo

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: