wings and things

An apple crumbly day

on May 13, 2012

Son and I went in for lunch with Husband at the nursing lodge today and it was lovely. Well, the food was lovely, Husband was feeling okay, Son arrived a little late from his last night’s party, and I was quite boppy but then, as Husband ate his dessert, my dessert and Son’s dessert, hardly looking at us, I felt my boppyness subside into a more low-key tone.

“Are you starving?” I asked Husband, laughing at his appetite.

“Well, you never make me sweets,” he said, polishing off the third apple crumble and custard.

Son and I got the giggles briefly and Husband glared at both of us, between mouthfuls, then winked and said, “Glad I provide you guys with so much amusement.” His mastership of irony has always caught me off guard and, as I didn’t have an appropriate response, I just said, “You are such a glutton!” and he replied, “And you are such a glutton for punishment,” and reached out and squeezed my knee.

Not long after this, when the three of us were back in Husband’s room, he started to have one of his ‘turns’, getting very drowsy and weird. We alerted the nurse, then eventually we left Husband almost asleep in his chair and came home. Needless to say, all my boppyness had dissipated. We had only been there for two hours but it had felt like ten hours – oh, the guilt of admitting this!

But worse was to come when Son said, “Mum, I don’t want to do this anymore.”

It seems so strange that only a few days ago, I was worried about Husband’s apparent heartbreak at not coming home to the farm overnight anymore; then, when we encountered such difficulties bringing him home just for the day (and his lack of mobility shocked me), I realized that all three of us have to somehow accept that the nursing lodge is home for him now.

So already, the routine we decided to stick to (several posts ago) has become impossible because getting Husband home has now become a big ordeal due to his deterioration with Parkinson’s, which I think is in its final assault mode. I hate this disease more than I have ever hated anything because it is so slow and cruel and humiliating and scary. Many of Husband’s best friends are nervous to visit him and I don’t blame them at all.

I think the most heart-breaking thing today though was when Son reiterated to me on the way home, “I don’t want to see Dad like this any more, Mum.”

And this puts me in a dilemma. Do I force Son to come with me to visit Husband or not? My opinion is not – and to let Son choose when and if. He has been through this huge scoliosis surgery which more or less coincided with Husband going to the nursing lodge and, now that Son is nearly out of his spinal brace, I think Husband and I need to let him go, let him do what he thinks is best.

Below is a photo of a photo of Husband and Son, when Son was just born. I love this photo!

Oh yeah, and I’ve never particularly liked apple crumble anyway.

50 responses to “An apple crumbly day

  1. Sweetie I adore your honesty. Its deeply touching and refreshing. I dislike fake emotions. There is nothing “nice’ about what you are going through. I don’t know Parkingsons personally but do Alzheimers. The raging anger at how something so cruel can take a loved one from you so damn slowly. Its natural I found to want to scream, “get it over with please!”

    For what it is worth I agree with you about allowing your son to make his own choices. He is a sentitive kid its apparent,but an adult who is loving his dad so closely that it just hurts too much right now. I’m always willing to go out on a limb and say his feelings and emotions are likely to change on an every day basis. Neither of you have done this before, there is no magic steadfast rule.

    Follow your heart Jules, you’re doing just fine.

    • jmgoyder says:

      Thank you so much for this reassurance, BB! Yes, Husband has Parkinson’s Disease Dementia too (PDD) but the dementia thing comes and goes – so unpredictable.
      Son is going to another party tonight so I will be alone – which I love!

  2. eof737 says:

    Hi Julie,
    This is a touching story and yes, deeply moving and honest… I admire your spirit. Sending love, light and good cheer to you and yours. ღ˚ •。* ♥ ˚ ˚✰˚ ˛★* 。 ღ˛° 。* °♥ ˚ • ★ *˚ .ღ 。*˛˚ღ •˚ ˚…Sending sprinkles of Love to all: Happy Mother’s Day! ˚ ✰* ★
    ˚. ★ *˛ ˚♥* ✰。˚ ˚ღ。* ˛˚ ♥ 。✰˚* ˚ ★ღ ˚ 。✰ •* ˚ ♥

  3. Hugs to you! I’d be letting your son decide too. It’s obvious he loves his dad, and this is such a hard situation, as the person you love is slowly stripped away from you. Holding you all in my thoughts and prayers. Enjoy your time alone xx

    • jmgoyder says:

      I don’t know how but somehow in creating my blogroll (to save my sanity) I didn’t put you there and I’m so sorry! I’ve done it now and would like to thank you so much for all your inspiration, not just to me but to soooo many!

  4. bluebee says:

    Son will have a hard time of it no matter what he decides, but I think you’re wise to let him make his own decision about seeing his dad – none of you can fix the horrible reality of your situation and you just have to deal with it in whatever way you can, day by day, each in your own way.

  5. terry1954 says:

    i also hate the name Parkinson’s. i see what it is doing to my brother, sucking the life right out of him. i have never understood why when my brother goes into a hospital for days at a time, why it is so hard to visit. i have to force myself, and i have wondered what i will be like if he is admitted to a nursing home as this disease takes over him more and more. i think after reading about your son i have put my finger on it. it is seeing our loved ones in another way that is not the usual way. to see a loved one more helpless and needy. it is the pain we feel for them, and sorrow. i know that if my brother is placed, i will visit, but i wonder if i will visit enough, or if someday he will recognize me still. this leaves for me a nasty taste in my mouth, as i wonder if i will change and want to only remember the days when all was normal

    • jmgoyder says:

      I think you are extraordinarily heroic in your care for your brother but it does sound like soon Al will need to go into a care facility – I don’t know because this is your situation, but the wonderful place where Husband is has certainly eased my mind (despite my guilt and all the sad stuff). It is the hardest thing but once PD gets really bad – and, even though it crept its way slowly, it has now almost entirely consumed Husband who is incapacitated in every way possible, with just short spurts of walking and talking ability. Oh, Terry, I do wish you well with whatever you decide for Al. It is weird because it is almost as if we (you and I) are in the same exact boat but you are the one rowing and I am the one who gave up.

      • terry1954 says:

        you have not given up. your husband’s is more advanced than my brothers, but he is making his way to the spot you are in now. i wish i knew what to expect next. he can still walk, but not good and not very far. i have found myself having to help feed him a couple of times. i never know quite what stage he is in as he has good and bad days

      • jmgoyder says:

        That’s the trouble with the stupid disease – it is so unpredictable and can worsen so suddenly. I hate giving advice but maybe you should begin to think about a nursing home – please forgive me if I have overstepped here!

      • terry1954 says:

        u haven’t over stepped, don’t feel this way. there are days upon days, that i wonder how long this stage will last, or what should i expect next, or is symptom due to Parkinson’s. please, if you have anything to offer, please tell. i read the same thing over on the internet. there are five stages, but it doesn’t tell actions or behaviors

      • jmgoyder says:

        Me too re trying to find out what is next on the internet but all I know is that, with PD, especially when it comes with dementia, it is very much an individual thing – ie. you can’t predict day to day or minute to minute sometimes. Husband can be walking one minute, then semi-comatosed the next. Yeah, I sort of know about the 5 stages thing but the trouble with that kind of model is that each stage can leak into another and you, as carer (and me too) have no idea what is coming next – or what is going next. I’m sorry if this isn’t helpful but, again, I suggest you at least explore the idea of permanent care for Al, just so you have that up your sleeve. I really am amazed at your unselfish, wonderful care for him but I also understand too, because it is obvious from your posts that Al is quite a fantastic character. I wish I could help more!

      • terry1954 says:

        this is sad that there is no programmed cycle. it also explains why he has good days and bad. i often think when he has a good day, how long will this last. this is foolish thinking but i can’t help it. i see them so rarely, i want the good days to last forever. when you compare cancer to parkinsons, i choose cancer. you know your deadlines, and there is more medicines to help. hope you understand my thinking on that last statement

      • jmgoyder says:

        Oh I understand totally! It’s the unpredictability that is maddening – much worse for you if Al cries; that must be terrible. Husband doesn’t cry but he is definitely depressed now – another thing I need to see his doctor about.

  6. victoriaaphotography says:

    I agree with every other commenter. Son should be allowed to make up his own mind.

    I guess the important thing is, that at some time, one would hope that Son decideds to visit his Father every now & then, as if he didn’t, I suspect Son might regret it at some later time in his life.

    And while Husband is still mentally aware, I think Husband would miss seeing his Son.

    Try a couple of visits without Son and see how both Husband AND Son feel afterwards. Maybe that’s the best way to proceed.

  7. camsgranny says:

    I agree with everbody else’s comments. We have taked about this before, but Son should make up his own mind, it is very hard to watch someone with this horrible disease, and when you see the deteriation in the one you love, sometimes it’s very hard to pocess.
    The hardest part is that while you can seach the Internet for anything and everything about the “stages”, it really doesn’t matter because each person affected with PD reacts differently. There are no “guidelines” and that sucks.
    The worst part also is that this thing is slow, drawn out, and does strip the dignity out of the person who has it.
    My heart is with you and Son. Big Hugs to you both.

  8. Your husband is being taken care of, your son knows what he wants to do, seems to me you just need to look after yourself, and keep your mental health together. Parkinson’s touches so many families. You’re not alone in having to make these tough decisions, and you shouldn’t be feeling any guilt over them. You’re taking care of everyone as well as anyone can expect (and then some). Now take care of yourself.

  9. I too love your raw honesty and continue to hold good thoughts and prayers for you all.

  10. Robyn Lee says:

    Yes Jules… I think Son’s declaration is probably a reflection of his own healthy emotional guidance system. He knows what he can handle (and can’t) and for now…needs some distance. He may surprise you and after a break, request to resume visiting ~ but for now, he is probably best off making the call. I know it may be more stress or strain for you without him by your side…all so hard, and I’m praying you can manage this and maintain your own emotional health. Sending giant HUG – what an amazing woman you are… RL

    • jmgoyder says:

      And I have actually told Husband a bit of how Son feels now and Husband understands – it’s still sad though. Thanks Robyn!
      ps. I am not amazing, you are!

  11. I wish for peace in your heart and hope for the best.

  12. Tilly Bud says:

    Your son is old enough to make his own choices. All you can do is make sure he knows what’s coming, and let him decide. Some people need to remember their loved ones as they were, so they are not left bitter and resentful. He has had so much to cope with in his young life, it may just be too much to see his father this way. It would be too much for many a mature adult child.

  13. Judith Post says:

    It probably won’t work for you…because it’s time consuming to visit your husband, but my mom’s pretty close by, so we make the boys go with us to say “hi” to her, but they only have to stay ten or fifteen minutes, and then they can take off and do their own thing–they have friends who live in the neighborhood. We meet up to come home. If Mom’s having a “good” day, a lot of times they stay longer, even when they don’t have to, but that’s their choice.

    • jmgoyder says:

      I think once Son gets his car licence (he can’t do the test until the back brace is off) he will get the independence he needs to come and go as he pleases – great suggestion and I thank you Judith!

  14. Fergiemoto says:

    This is very touching, yet heartbreaking. What a horrible disease.

  15. I can only imagine how hard it can be for your son to see his own father fading away in front of his eyes. He hasn’t roughened up like most of us who are older and probably doesn’t want to remember his dad this way after he passes away. I’d let him decide for himself, not to make the hurt worse, but make sure he has the opportunity to say goodbye. What a tough situation to be in, I’m so sorry for you and I hope you keep surrounding yourself with lots of supportive friends.

  16. My heart goes out to you all! I can only imagine the pain of having to watch what husband is going through and be helpless to do anything to make it better. Hopefully son will find the inner strength to resume visiting his father at some point. It will probably be one of the toughest things he will have to do in his life.

    • jmgoyder says:

      I tried to block this one from the automatic link to facebook but it didn’t work and Son read it this morning and he was fine about it (he doesn’t usually read my posts) and he said other people thought he should be free to make up his own mind so was that okay and I said yes.

      • Very sorry for any distress my comment may have given anyone. I absolutely agree son needs to make up his own mind and completely understand his need to not to be consumed by his father’s illness. I can not imagine dealing with all he has and is dealing with at his age. He is incredibly brave and big hearted. Like his parents.

      • jmgoyder says:

        What distress? You are fantastic and I thank you so much!

  17. batgurrl says:

    Jules – let the young man think he can say he won’t go see his Dad. In the end he will come back around and visit again. I sense this in my bones it was a moment of distress and it will pass.

    Hang in there!! And you know my husband says those witty things too. I can’t ever seem to come up with the come back until it is so late it isn’t even a come back but a way back. 😉

  18. Oh, these are the painful things of life! The things we most certainly can do without! The photo is great–I see why you cherish it. I think you are right–son has to make his own decision–which can’t be easy. Hugs to you all!

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