I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.
Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.
On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.
After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.
Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.
I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.
One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”
So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.
Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.
I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.
jmgoyder 
Guilt is torture.
You certainly have my forgiveness (and admiration).
But don’t forget to forgive yourself.
Okay thanks Vicki – you are right about the guilt.
I for one appreciate your admitting Jules. As you know I care for my mother – I do my best not to show her impatience and she has no condition like Ants but to die slowly from old age is equally painful to watch… hugs to you
And HUGS to you!!!
Guilt is a wasted emotion here Jules – what you are talking about is being human, having days of exhaustion and moments of irritation; episodes where the denoument leaves you breathless with disbelief and discouragement. And if your dearest friend was dealing with the same situation, you would be speaking with her in similar terms. No guilt. You are doing all you can and then some. And so is Ming. I remember these days so well – and realize now that there are few ‘should haves’ when one is loving with a full heart, giving with all the energy a human can muster and balancing a future which holds unpleasant foreboding. Hugs, m
Thanks for your wisdom here, Mimi – cannot thank you enough!
Its evident that you love Ants so much but its also true that the increasing difficulties he has cannot be managed by you alone, so you feel guilty. Its a harmful emotion , when its not justified. All we can do is the best we can, if its not enough, we have to accept we need help from others. Don’t beat yourself up Julie. Your a good woman.
Thanks Brenda!
Thank you for blogging , warts and all. You have given me greater insight into PD
Dearest Julie
What you feel and say is common- the difference is most people aren’t brave enough to share this…
Julie I don’t want to intrude but you mention tube feeding- this is very uncommon “these days”. Has Ant made this choice in an advanced care directive? Does he have one?
Take care, this stage is ridiculously unfair and hard on everyone 😦
Krystal x
Thank you, Krystal – so much! I am glad to hear that tube-feeding has been done away with. I still haven’t filled out the end-of-life form because I just can’t at the moment but your comment has reminded me to do so. Julie xxx
think about the fact that so many would have given up by now and you have not
I think the reason I feel so guilty is that it is so tempting to give up. Thanks for your support.
and if you ever do–remember you have fought the good fight–and this is just as hard on you as it is your beloved husband
I really feel for you, Julie. It must be really hard to cope with having Ants at home. You’re only one person, after all. Took my mom out for lunch yesterday, and wished I hadn’t. It wasn’t an enjoyable experience for any of us. *hugs*
I know how you feel!
My gran is deteriorating mentally through dementia, she frequently acts almost like a stroppy toddler and as much as I love her I find it increasingly hard to visit, not only does it kill me seeing what she is becoming but I take my five year old who of course wants to see his great gran but gets bored there very quickly then of course he starts playing up which leads to her playing up and me getting very stressed with both of them, I know time is not on my side and that she will not be there to visit at some point in the future but between work, life and kids sometimes I find excuses not to visit, does that make me a bad person? No it makes me human and you struggling to watch someone you love change makes you human too xxxx
Oh how well I understand this! Thanks Paula.
Hugs, Julie. Your honesty and integrity shines through.
Thanks Kate!
All I can offer my friend is HUGE hugs and love. Guilt has no place when you are caring and loving someone with such a debilatating disease, please TRY not to feel that way, you and Ming are doing all you can. Love and hugs my friend~Len
Thank you Len!
We’re all only human. We do the best we can.
I guess
Thank you for this honest and raw post Julie. I have no doubt your openness will help others to understand that they are not alone in the way they feel and act when taking care of someone and remove some of the guilt they feel.
Hugs,
Diana xo
The guilt can be worse than anything else so thanks for your support here, Diana.
You’re not alone in your thoughts and feelings Julie. I so remember dealing with some of the same issues…though not Parkinson’s. She was such a vital woman until she had a brain aneurysm and subsequent brains surgery. It began the deterioration process of her brain function… We all loved her so but admittedly when her personality changed and then her physical including incontinence etc. it became a tug of love vs disdain… not disdain of her but of the process itself. And even when she went into a nursing home where she languished for 7 years, I knew that I had to visit her and did each week on the weekend as I worked during the week and it was 2 hours away. But I honestly didn’t like to go, again only because of seeing her like she was…. but the love of my mother overcame the negative feelings. I would imagine almost everyone in your situation faces the same feelings….. Diane
Thank you so much for your understanding here, Diane, and your wise words.
In your case Jules, I don’t know if you or any other caregiver should be labeling what you are feeling as nothing but human. I know that the feelings of guilt are strong, and you feel that you need forgiveness, but you are being dealt an extraordinarily tough hand. I think that the universe all around us would tell you that you are being your own toughest judge, Huge hugs and I’m glad that you got this off your chest, writing it out has to feel better than keeping it all inside.
Oh thank you Laurie!
One has to stand up and realise that we all have limitations to which we can go, and beyond that point it is not only not good for Ant and neither for you. It sounds as though that point is nearing. We had the same with my Dad and in the end had merely to accept the fact that we visited him at the home and nothing more. They are better at it in a place where they can handle all of it better than we can at home. Yes it was heart breaking when Dad wanted to go home in his lucid periods, but we had to accept the fact it was impossible… don’t feel bad Julie it is not a reflection on you, in fact you have been very heroic in what you have done up to here, but the time is near to accept that Ant can’t come home any more… STREKTE
I think you are probably right about not bringing Ants home any more – thanks Bulldog!
Imperfection is part of the human condition. You and Ming are perfectly human. No forgiveness require. Now if you are going for sainthood… you might have a problem (emphasis on the might). On the bright, side halos look a little pretentious and have a tendency to fall off…
Haha – no halo here for sure and I wouldn’t want one anyway – thanks Linda!
I really feel for you. This reminds me so much of the feelings I had with my mother and dementia. It’s unbelievable tough to live through. It is a war zone and the battle within our mind to stay sane with the insanity is tremendous. One of the hardest things for me was to push the guilt aside when I put a “no hospitalization” order in place for my mom. Hospitals simply prolonged and tortured her – especially when she was confused and had to be restrained. Of course, her minor ailments were still treated and comfort measures were always in place. Therefore, the feeding tube issue is definitely something you might want to address right away. My mom had one after she came off a prolonged eriod on a respirator. She was a fighter then. Later on, I didn’t want to have one put in because her dementia was so advanced and it would have prolonged her pain. I assume you know Ant’s wishes, and even if this is a delayed thing – it is not too late to put things in place so you won’t be rushed into anything later on. My heart aches and aches for you! And as always, thank you for your support. We are continents apart, but our hearts beat together. 🙂
Judy – you really are a one-off! I am struggling at the moment but you always give me something to mull over – thanks for your generosity of spirit and your music! Jx
Sounds indescribably awful, you are so brave.
Not brave at all and your brother has been amazing to me in terms of encouragement.
I don’t know for sure, but I’m wondering whether grief and regret don’t sometimes feel an awful lot like guilt. Surely you don’t really expect yourself to be so impassive as to never show that you’re tired, impatient, worn out?
You wondered what you’re running away from–if I were in your position, I know I’d be running away from the full force of my bereavement, which I just wouldn’t be able to bear all the time without a break. I admire you, Julie. You’re showing remarkable courage and perseverance in extremely sorrowful circumstances. You’re faithful, loving, authentic and human.
Thanks for getting my mind working again, Tracy!
Julie I’m no expert…but I think what might be more wearing on you, and maybe intensifies the guilt you feel, is that the loss is ALWAYS right there. There’s the guilt of the impatience ADDED to the horrors of watching Anthony decline, ADDED to your grief of the loss(es). I think if you were having this discussion with Anthony pre-PD, he would be the first to tell you not to do this to yourself. Do not carry around that burden of guilt. You are going the best you can, and it seems pretty wonderful. We are all faulted, imperfect, but trying our best. He knows.
The trouble is we never had any of these discussions so I guess that is why I feel a bit lost now. Thanks so much for your support.
Your previous post ‘a conversation with dementia’; means anything negative is the dementia.
This one ‘a conversation with a tortured carer, feeling the pain of her loved one’; means anything negative is the torture.
Ants is so lucky to have such a wonderful caring devoted wife as you.
Oh Elizabeth – thank you so much for this. Jx
Oh Julie, I know so well how you are feeling. I feel the same way so many times. My big issue is I just want to sleep. Please, just let me sleep n let me wake up on my own. Being a caregiver for a family member or a paid job is hard without all the emotional pain too
You know it!
this is such a hard road for all of you. everything you are experiencing is normal in the path these diseases take. being the caretaker is very very challenging and you do not deserve to feel guilty about you what you can and can’t do and how you feel. it is all completely human and understandable – hugs ) beth
Thank you Beth!
It’s not your fault. Keep that in mind. It’s terrible but it’s not your fault.
Okay.
What you admit to is normal. As you say, his condition is draining and by taking a break you are able to go back and help him with a smile.
Getting harder now as he deteriorates – thank you Colline.
I don’t know any human who doesn’t experience the array of the emotions, guilt, et. al. No one’s exempt. Thankfully, it all passes and get balanced with other stuff, the good stuff. I see me in you. Need I say more? Love, P
You are a star, Paulette!
I so get this even though I have not had to deal with it myself I know that one day I might have to with my dad, his memory is going. I also know the guilt my pop had about nan having to go into a nursing home when he got sick, he so wanted her to stay at home with him but he was sick and had to go into hospital and then into a nursing home himself. I don’t know how he coped with him at home caring for her himself suffered from incontinence and he had to change her when she had an accident well in the end she was in adult nappies.
Your family is amazing!
You are no different from the rest of us Jules. We are all human and we all have our good days and bad days. Sending (((hugs)))
I am contemplating not bringing Ants home any more but very unsure – thanks Elizabeth.
It’s completely understandable Jules. There comes a tipping point when your own health and well-being is put at risk. But, no matter when it comes it is still heartbreaking and going to take a lot of courage. Praying for you all. (((hugs)))
Thank you Elizabeth.
Thank you… I really appreciate your honesty. You are doing a great job!
It is getting so hard, Kaitlyn.
I have fallen short so many times, snapped at someone,come across as aggressive, been less than kind…I have to forgive myself so that I can still be useful.
Useful – yes – thanks for this piece of wisdom.
does little good to tell you not to feel it…you’re going to because you give everything you’ve got and it’s not enough.
but bear in mind…keep in the FRONT of your mind…none of you asked for this, could not be prepared for this, and none of you will ever get to a place of calm acceptance as long as you have breath in your bodies.
I can say ‘don’t beat yourself up’ and you can say ‘i’ll try’…but I won’t say that because you don’t need another thing to ‘try to do’.
Make a promise to yourself, when you close your eyes, every night, “I’ll feel what I feel when I feel it because I have no control over what’s happening. I will always remember I did everything HUMANLY possible, to show him how much I loved him. No regrets.”
love you jules
And I ADORE you, Rhonda!
good thing…I tend to run off at the mouth a bit. but you know it’s with love. xo
Julie, Yes you will have to forgive and you will, but you will also cherish this time. And the next time you will also forgive and again you will cherish the time. I have little experience in what your going thru. But I know true love, and I believe in my heart what you do and share with Ants is nothing short of true love. Take care, Bill
Thanks Bill xxx
So understandable–so much pain on both sides. Some days are beautiful and others so plodding in this life. That we would have the strength to handle both. Bless you.
Trying to get used to the unexpectedness of every day – thank you.
Jules, you are so very wise, and caring. I think it is human to break, and then to feel guilty. The wisdom comes in forgiving yourself. Telling yourself ‘not to’ is like telling the sun not to shine, or the rain not to fall. It will do it anyway.
As others have said, you are doing your best, and that is all you can do. and your best includes all the emotions you feel, the ups, the downs, the guilt. And, forgiveness.
I am in awe of your capacity to give, and to be so real and honest and vulnerable. You constantly inspire me and remind me to move into compassion, step away from judgement, and simply be present, however I am.
Blessings to you my friend.
I have just been catching up on comments – thank you so much for this Louise.