Monday, January 08, 2007

How and when

My dad has been falling down for a while now--two or three months, maybe more. In the last week, he has been unable to get back up. He fell next to his bed, he fell in the bathroom, he fell in the living room.

The Parkinson's problems are piling up--swallowing, walking, talking--and the workarounds are getting more burdensome. He doesn't care for the soft foods he can manage to get down; he can't go downstairs to the washing machine, so he wears the same clothes for days at a time. His once-lively conversation is now so quiet and uninflected that he just gives up with a shaky wave of his good hand. My sister, the only one local, calls every night on her way home; my dad calls her every morning when he wakes up. If he doesn't answer at night or call in the morning, she goes to his house. Twice, she arrived to find that he had been down for hours.

He does not want live-in help. He doesn't want daily help. He does not want so much as someone to stop by and make him a bowl of soup. He wants to live in his house, by himself, until it is absolutely impossible for him to do so. We are taking the measures we can--a new specialist, a medical alert device, safety rails, a shower chair--but we know that these steps are mostly for our own peace of mind, an outlet for this need to do something.

When he was first diagnosed, my dad made some oblique references to his "stockpile" and asked if, when the time came, we would "want to know in advance." I told him that, yes, we would want to know, if only to try to talk him out of it. I thought at the time that he was being a bit melodramatic, and that, perhaps, his saying such things was a sideways plea for help. That, perhaps, he wanted us to talk him out of it, reassure him that he had many good years ahead of him. But when he repeated these questions to my sister on Saturday night, she said he seemed perfectly straightforward: he wants to know if we want to know, or whether he should surprise us instead.

I am his daughter, the one most like him, and yet I have no idea how to respond. It is his decision: his faculties are not in question. But I don't know if I can stand knowing. I'm not sure I'm strong enough for that.


Anonymous Jen said...

Oh, sweetie, I'm so sorry that you're dealing with this, especially from afar.

No advice, just please know that you & your family are in our thoughts.

2:24 PM  
Anonymous Anonymous said...

I'm so sorry.

Either way would be terribly difficult.

I hope that the things you put in his house (shower chair, rails, etc) will make things better for a while.

2:26 PM  
Anonymous Anonymous said...

Bugs, I too am very sorry that you (and your dad) are in this position and you're so far away to boot.

I hope the new specialist has a good suggestion for handling the situation with dignity. Maybe s/he can convince your dad to accept a little bit of in home care?

2:54 PM  
Anonymous Jenn said...

I'm so sorry. No advice, just *hugs*

3:42 PM  
Blogger Cat, Galloping said...

oh man. if you know, then you KNOW and if you don't know, you spend every day wondering. is there a professional you can talk to about this? your family can't be the first to face this type of situation and there must be someone who can help, at least a little.

i am so, so sorry.

3:54 PM  
Anonymous Anonymous said...

I make a habit of searching Technorati for blogs posting on Parkinson's, because I have PD. I saw your post, and just wanted to say how sorry I am that your dad is in the situation he appears to be in. As a care giver, myself, I can only begin to imagine what you must be going through.

If you'd like to chat, my personal blog is

3:57 PM  
Blogger Lindy said...

Oh, Bugs. I'm so terribly sorry that you and your dad are faced with such a horrible situation. My thoughts will be with you and your family.

4:00 PM  
Anonymous Rose said...

Lurker here.

My grandfather did let us know (called everyone, was vague to some, crystal clear to others.). In hindsight, and even at the time, I was glad to know. Glad that he would be found quickly, that we could beat my grandmother there, and soften the blow a tiny bit, and glad that we could all arrive at the crisis together.

But if I had been given a choice beforehand I don't know what I would have chosen.

4:27 PM  
Blogger JJ said...

I don't have any advice either, but I'll be keeping you, your dad and your family in my thoughts.

4:37 PM  
Blogger Suz said...

I don't think that there is a less difficult way. I'm so sorry that you are all dealing with this.

5:34 PM  
Anonymous Anonymous said...

My mother knew. I was 17- I didn't know, or at least my Mom didn't tell me. Knowing gave her the chance to plan, and ask for what she needed- one last family Christmas, a last opportunity to visit with us and tell us stories.
We went over to his house, and he told us stories form his youth...Even now, 17 years later, I can still picture him, and hear his voice. It was the most animated I had seen him in years- and on that day, as we left, I knew it would be the last time I saw him. It hurt to know. But...I wouldn't trade that last visit for anything.
Planning it is hard, but, if you know, you can (hopefully) make requests for what you need to say goodbye. And plan the time to do it.

9:22 PM  
Anonymous stephanie said...

Honey, I am so very sorry you're in the middle of something so hard. Both ways suck. Nothing about either one is easy (but you certainly didn't need for me to tell you, right?).
Thinking of you and your family...

6:37 AM  
Blogger Millie said...

I'm so sorry.

My grandmother had Parkinson's and it was heartbreaking to watch her decline. So sorry you and your family are dealing with this.

Thinking of you all.

2:17 PM  
Anonymous Anonymous said...

Oh Bugs, how heartbreaking. I don't know what to say at all, I don't know whether I'd want to know. But I know I'd want for them to have that option anyway. Not that it should be of much comfort.

I'm so sorry, sweetie. Hugs.

2:26 PM  
Anonymous Elaine said...

So very sorry you're facing this. My father had ALS and it was heartbreaking to watch his decline. His situation was very different but in the end he contributed to a decision to discontinue drugs in the hospital, which was heartbreaking too but also weirdly empowering and allowed him to take control of the end of his life (and for me to get back to see him in time.)

Your position right now is incredibly hard, and like some of the others I wonder if there isn't some sort of social worker/counsellor who could help you and your father.

I think I'd prefer to know, because even though one can never be prepared for losing a parent, a degree of foreknowledge does help. It also allows "saying goodbye," which is hard and sad but helps as well -- the love that people express for each other at that time is one of the only supports there is for this kind of thing. Hang in there.

3:51 PM  
Blogger Ollie said...

Bugs, I'm so sorry. For you, seeing your father like this--it's so hard knowing your parent is ill. And for him, because that has to be frustrating to still want to be in charge of your life but your body has other plans. That just sucks.

7:26 PM  
Blogger Indigo Wolf said...

That's a really tough thing to go through. I've had that conversation with my husband in the event he ever gets that sick. I told him I would want to be there with him, so I could at least hold his hand. Man, just typing this makes me well up.... So yeah, it's really f-ing hard. Hugs to you in this difficult time.

11:54 PM  
Anonymous Menita said...

I was there once. It is a horrible place to be. I am so sorry, Bugs.

8:59 PM  
Anonymous Anonymous said...

Bugs, So, so sorry that you and your family are going through this. Big, big hugs...thinking of you. Maz x

4:35 AM  
Anonymous Anonymous said...

Your dad sounds alot like my dad. I am so sorry you and your family are having to go thru this, and I dread the day my family faces the same journey.

You and your family are in my prayers

Debbie from South Georgia

5:25 AM  
Anonymous Anonymous said...

Bugs... I don't know. I just don't know. I am so sorry that you are in the position, trying to figure out which side of it to fall on.

Thinking of you. Hope things get better.

9:21 PM  
Anonymous Anonymous said...

Hi Bugs,

Just thought I'd check in and see if things have improved any since your post. Thanks for stopping by my Parkinson's blog!

5:34 PM  
Blogger Dirty Butter said...

I came back to check on you again and discovered my last post shows as Anonymous. I don't know why????

Anyway, I hope everything's OK. Stop by Day by Day again sometime soon.

Dirty Butter

2:45 AM  
Blogger Joe said...

I, like everyone else, don't have any magic words of wisdom except to say that I will put you in my prayers.

I watched my own father's decline with Parkinson's disease and lived with him for the last 2 years of his life to help my mother take care of him.

As an RN I was trained that it is healthy for a person facing death to talk about it. So, as difficult as it was, I would let my father express his feelings about death to me. Although depressing, it was a learning experience for me and in the end I understood my father much better than I ever had before. He deperately wanted to take his own life, but chose not to because of the effect it would have had on my mother.

Perhaps your father's references to his "stockpile" are his way of letting you know he needs to talk about dying- if not with you or your family - perhaps someone else.

I can also tell you, both as an RN and as someone who also has Parkinson's, that 60-80% of the people with the disease suffer from clinical depression. I don't know if your father is being treated for depression, but perhaps it is something to think about. Some of the newer antidepressant medications also have the ability to relieve physical pain at the same time.

I wish you luck, and I will keep you in my prayers.

3:53 AM  

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