Saturday, 1 March 2008

Is that What People Think?

Something's been troubling me for a couple of days. As most of my readers know, I visit an online parenting forum. It has it's ups and downs, like most things, I guess. But I gererally enjoy the interaction. I enjoy getting involved with debates about parenting, politics, religion, the world around us. I find myself learning things, whether it be facts, statistics, new ways of doing things, or simply learning the way others feel about different issues.

Sometimes though, I'll read something that can leave me floundering. It can challenge that which I hold to be true and real and important. This happened the other day.

There was a thread where we were discussing how we felt about the care of our parents, once they need full time care .Would we care for them ourselves, or would we seek to place them in nursing homes (or the like)?

I was doing ok. I have no issue with the decisions people make. I noted that most people (after discussion with their families) had decided to go with the nursing home/retirement villge option. This is the option that my father wants to take, so I can understand it.

But a couple of people made a couple of comments (one person particularly) that left me feeling hurt and remarkably defensive. There were a lot of people who felt the deciding factor was their desire never to have to help their parents with dressing/showering/toileting. Fair enough, I guess, though was surprised. But then one came on and said "I'd never physically care for my mother. Her pride would never allow it". I sat back a little, allowed myself to process it, try to be objective. It niggled though. I asked "Do you not see the strength of character it takes to swallow your pride and allow someone to do that for you?". The response was along the lines of "I am more interested in preserving her dignity" She said it wasn't about love or devotion, but what was important was allowing them to keep their dignity as a parent.

I can't help it. I'm hurt. And am rethinking things. Things I can't change. I can say, with absolute honesty, that my primary objective, the entire time she was ill, was her dignity.

I saw the toll this wretched disease took on her body, and her spirit. To lose the ability to move, eat, drink, dress yourself. Brush you hair. Shower. Toilet. Speak. Be seen as the person you've always been. THere is nothing, literally, that I took more seriously than considering her feelings in every single thing I did. I went along with her decisions about medication, even when I strongly disagreed with her. It was her body, and she was still of sound mind, so it was her call. The number of people who said to me, "But you're medicating her. She'd never know. Can't you just give it to her?". Not just family. Doctors. I was adamant. She was making all of the decisions, until she simply couldn't (in other words as long as she was conscious).

I remember the first time I had to help her on the toilet. She was in the hospital, for some assessments. Her treatment up to that point had been nothing short of appalling. I still have nightmares about the things that happened that night, after we all left.

Dad had had to duck out for some reason. I don't remember what. I knew she needed to go, but she was holding out. Sh ewasn't ready for this to happen. She kept buzzing for a nurse, but the poor things were run off their feet. I remember the look on her face. It was as though the illness had just taken yet another thing from her. It had, I guess.

I took her in. She was so mortified. I tried to be as pragmatic as I could. "I can only imagine how hard this is for you, Mum. But I'm ok. I'm not uncomfortable, sqeamish or freaked out. I wish this wasn't happening to you, but I dont' know how to make this easier for you. I want to help you."

We tried to make conversation, talk about things of absolutely no consequence. We did our best, and somehow, though she cried, we managed. There were many occasions, in the months that followed, where we would make idle chat as I helped her dress, toilet, shower, eat, drink, shave her legs, paint her toenails and brush her hair. I eventually became the only person who could speak for her (being the only person who could understand her attempts at speech).

Did people think she had no pride? That she was selfish to allow me to care for her? DId they think I didn't care about her dignity? Do they not know how difficult it was for us both, but how we strived to consider each others' feelings. Do they know that just weeks before she died, she told me I was the only person who had not hurt her feelings?

That there is nothing I'm more proud of than that one comment. Surely I didn't get it so wrong? Surely I didn't take away her dignity? I can't bear the thought. But now, I can't shake it.

7 comments:

  1. From the sounds of it, you did everything RIGHT.

    People have no idea until their parent is in the situation. I suppose they would have preferred their mother go to the bathroom in the bed rather than take her to the toilet? Oh yes, now that is dignity. You did the absolute right thing in the way you cared for her.

    Typical EB, they have no clue...;)

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  2. Yes, I agree. Until you've been in that situation, you've got no idea how you'd cope.

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  3. The person who made the comment has probably not had an invalid parent to deal with and is just talking from their parents current POV.

    My dad is adament that he won't be a "burden" on any of us (his words). It makes me so sad to think that he would ever consider himself a burden to anyone but there's no changing his mind.

    He has a DNR order in place and has given me instructions about what is to happen if he's ever seriously ill - he's not even sick yet but that's how strongly he feels about maintaining his dignity and being a burden on others.

    If it came down to it I would do exactly as you did - as best I could. I would ignore his wishes to some extent and help him.

    Hold onto your Mum's last comment - you did it all *right* Mel, don't second guess yourself.

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  4. Mel, it sounds to me like the care and companionship you provided for your Mum during her illness was coming from a blace of utmost love and that she needed and appreciated you being there for her in every way. I agree with Kim - there's no need to second guess yourself. You're a full-on trouper! You have been in the most sad and testing situations and have handling things with such strength and selflessness.

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  5. I have sat here for a while now not really knowing what to write. There are certainly no qualifications in my history to deem me worthy of commenting with any authority on what I would do - and from the sounds of it, the person who replied to your question elsewhere was probably not experienced either.

    One thing shines through: your pain and anguish over your role. I wholeheartedly agree with your other commenters here. You cannot second guess yourself, not now. Your mum knows you did a stellar job. I am hard pressed to think of any other way it could have happened. Cherish those memories as part of the healing and strengthening of YOU as you are today. You are not answerable to those others so please do not try to second guess the dissenters' questioning of you. xx

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  6. Mel- you gave her her dignity by doing as she asked and needed with grace, love and dignity yourself.

    You gave her in her last days something very special. You gave her the knowledge that she raised a beautiful caring daughter who will grow up to raise her children with the same attributes

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  7. This post moved me very much. With tears in my eyes, I don't have anything more to say than that.

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I know we're all busy, so the fact you've taken time out of your day to comment and connect with me means so much.

xxxx
Melissa.

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