Saturday, May 31, 2008

I discover the Caretaker Blues: Elizabeth discovers Pain

Elizabeth was confused about the gifts she was receiving through the mail.

“What did I do to deserve them?” She asked me.

I thought for a moment and my practical side said, “Well, you gave many online readers presents from Japan and maybe they wanted to return the sentiment?”

She didn’t believe that anything she sent could be the reason, plus she thought some were from people she didn’t send anything to.

“You show people that you really care about them. They can see they are important to you. You talk to them every day and when you hear they are having down days you write a postcard or send a gift to cheer them up. I think showing you care is one of the greatest gifts you can give someone.”

During the time Elizabeth was with fever and after, we had been ill in our own relationship. Between the week of medical tests and the week of Elizabeth being sick and me trying to catch up at work, I felt out of control. I felt like I didn’t know where to turn, so I just kept ignoring things. Sometimes Elizabeth was part of these things.

Elizabeth confronted me after a few actions that something was wrong and my reaction was “nothing is wrong.” Elizabeth kept asking “Why did you…?”, “Why did you say…?” So MANY “Why?” (sheesh, WHY can’t she let me be!) So I went to the park and wrote a list of my emotions. As I started writing, the list got longer and longer with more and more pages. I began to realize that I was in denial, I was in, “ignore it and everything will be okay” mode.

Yet some of the statements I wrote down were:

“Anger and self pity that I have to make decisions on my own”
“Scared to express my feelings”
“Always feeling torn (demands on my time) between work and Beth”
“Scared I’ll lose my job and benefits”
“Angry that Elizabeth has to be sick”
“Angry that family doesn’t support us”
“Frustration that I have to make up so much work” (If it is a child or a parent I wouldn’t have to make up any time, but any medical appointment I go to for a SPOUSE, I have to work back.)
“Angry that I can’t keep up with the little things, like chores”
“Angry with the medicos”

This is just a small part of what I wrote down and it seems like I DID have emotions, just the ones about caregiving (or the future) were ones I wanted to hide.

I went home and talked to Elizabeth about some of the list. The problem was that Elizabeth felt frustrated and depressed that so much of what was bothering me was about her illness; something she WOULD change for me, if she could.

And then, when we were trying to find her sports outfit for boxing, I kept saying, “I know where that is!” only to run into YET another pile of laundry that Elizabeth had washed but I had never put away: a stack in the bedroom, a stack in the living room, a stack on the kitchen chair, a stack on the dresser, and on and on. I don’t remember if I actually did scream, but it sure made me want to.

When I came home from work yesterday, after finding out I was flying out AGAIN next week for a meeting in Vancouver, our apartment looked very different. I could see our furniture, like ALL of it, not just the outlines.

Elizabeth had spent the day, including working two hours with her home care person who could put things away, to find the clothes, to sort the clothes and to hang up and put away the clothes; only to find MORE stacks of clothes! So she sorted and put away those too as well as doing two loads of laundry. She also cleaned the living room, the area around the couch, organized the clothes drawers and hangers and took out about seven or more bags of garbage. There was even my bed made.

I know it may not seem like much for many people but for me it meant a lot. It told me that:
1) Elizabeth was really listening to what I said (about my feelings)
2) Elizabeth loves me and wanted me to come home to a place where I didn’t feel guilty or upset at work undone.
3) This kind of housework takes Elizabeth a lot of time and effort since she cannot walk and carry things but must make many, many trips in her indoor wheelchair just to sort or put away one stack of clothes, a little bit at a time. This is probably why she is still in pain and exhausted today.
4) I was married to the best person ever.

She said she wanted me to be able to come home and just relax, to read a book or whatever I wanted. I did do a Sudoku, and read the paper.

Another gift she gave was some inspiration. Yikes – the “I” word. With some of the work done other chores I had put off didn’t seem as insurmountable anymore. I sorted through the piles of shoes (almost all mine) in the entrance way last night. Today I returned the Gatorade and water bottles to the recycling depot, donated some old clothes to charity and on the way back picked up pots for the soil and herb seeds I bought a few weeks ago. Haha! We actually have a ‘home’ again instead of various piles with small wheelchair pathways and occasional places for sitting down.

Thank you Elizabeth. You’re the best!

Well, that is enough about me and my ‘caregiver blues’… you’re here to read about Elizabeth.

Combining boxing and housework within 24 hours is a recipe for pain, pain and more pain. When Elizabeth came to bed last night she was hallucinating from it. She thought there were people in the room with knives, including me, waiting to skin her. She had already taken double the pain pills and muscle relaxants she usually does and it didn’t seem to make things easier. Her muscles were also twitching over her body.

She did eventually get to sleep and had to take another set of pills in the morning. She slept off and on for 8.5 hours, being woken by pain. Her energy is low, which means she spends a lot of time with her head held up by the wall. I guess it is to be expected.

She was able to meet with me and a lady from Lifeline who had come today to install a special two-way phone system. Lifeline provided a wrist band with a call button so that if Elizabeth needs help and no one is around she presses it and is automatically connected to a helpline. They will talk to her and if they can’t hear her (she’s unconscious or otherwise unable to speak) they will call me at work. The phone has a speaker and in theory should be able to pick up her voice from any room in the apartment. Because we’ve got too many air conditioners/fans running and her voice is soft it DIDN’T work. We’re going to rearrange the study and put the phone in there as this is where she spends most of her waking hours.

Also I got approval yesterday from the building owner, via Fran our building manager, that I could get an air conditioner. First Fran suggested pinning dark sheets to our curtains to cut down the sun’s heat. When I told her we had already done that, she said how about a portable air conditioner as it would cool the whole apartment. I told her we bought one last year and it isn’t powerful enough to do that. Not only is it not powerful enough, it’s twice as noisy as a window unit and twice as expensive. She said it may be half the price to buy a window unit but then they’d have to replace the window to make it fit. What?? I told her I thought we could keep the existing window and put some plywood in the open space above the machine. She reluctantly agreed – "but make sure it isn’t Styrofoam, because even though you live on the third floor someone might see the Styrofoam as an easy way to break into the building." Okkaaay… if someone had a ladder long enough or was willing to risk scaling our building I think they’d deserve a reward of some sort because when it is hot EVERY window in EVERY apartment is open. Besides, who’s stuff would they steal? Ours, so why should she care? I think Fran would LOVE to inspect our place and point out the MANY things she thinks we “should” be doing, but since she seems little concerned with how things affect Elizabeth’s health, I have no interest in listening.

Guess we’re going air conditioner shopping this week. Fortunately the weather hasn’t been unbearably hot for Elizabeth the last few days.

Elizabeth is up now, but had some sort of neuro short-out during the long nap. So I guess I am in charge of the thinking around here. And my thinking says, “We’re going drinking!”


Veralidaine said...

Elizabeth, literary afficionado that you are, you may think me mundane and nerdy for my choice, but while rereading Return of the King (JRR Tolkien) tonight I came across a quote about the loss of memory and the experience of pain for you.

Frodo is exhausted from carrying the One Ring and from its effects on his psyche in this passage, and Sam is suffering caregiver blues of his own. They have both just doffed their disguises as orcs and are getting rid of the heavy things they're carrying in order to travel lightly:

"Hardest of all it was to part with his cooking gear. Tears welled in his eyes at the thought of casting it away.

'Do you remember that bit of rabbit, Mr. Frodo?' he said. 'And out place under the warm bank in Captain Faramir's country, the day I saw an oliphaunt?'

'No, I am afraid not, Sam,' said Frodo. 'At least, I know that such things happened, but I cannot see them. No taste of food, no feel of water, no sound of wind, no memory of tree or grass or flower, no image of moon or star are left to me. I am naked in the dark, Sam. There is no veil between me and the wheel of fire. I begin to see it even with my waking eyes, and all else fades.'"

It's not a cheery quote, but perhaps in some way it will help you, literary-minded as you are, to see evidence of another author who understood being naked in the dark and resisting nonetheless.

cheryl g said...

Sis, the answer to your question about the presents is... you deserve them because you are you.

Linda - you and Beth are a wonderful partnership. I am just going to remind you that you don't have to do it all alone. I am just a boat ride away and will come help out as needed.

Yahoo for the air conditioner approval!

Sis, I hope your pain levels off soon so you can sleep better.

Have a drink for me!

em said...

Linda, I'm impressed that you pushed through the caregiver denial blues, and found your feelings again. Impressed and glad. And Elizabeth, yeah, you send out that caring and that is not a thing to take lightly. You are getting it back.

Neil said...

Linda, I know you love Elizabeth, but even the ones we love most can make us crazy sometimes, without intending to. If you're not finding some support somewhere, you're going to get sick yourself. So you just go right ahead and vent. I am (and I'm certain WE are) here for you too.

Zen hugs for you and Elizabeth! And I hope you can BOTH sleep tonight.


yanub said...

I dare say, Linda, you are right about what Elizabeth has done to deserve gifts. I know of few people as generous and thoughtful as she, so it is no wonder that people want to reciprocate. After all, look at what she gave you when you told her how overwhelmed you feel! And I know she was happy to do it, that giving makes her feel more alive, and that the gift is worth the effort. For someone who claims to be self-centered, Elizabeth does a very poor job of being selfish.

What a mess you described! That is definitely the sign of life out of balance, when the disorder of stress adds to more stress and more disorder. Could you perhaps have someone in every couple of weeks to help straighten things up? If you can afford it at all, it will be well worth every cent.

Veralidaine--neat. I had never thought of Frodo and Sam in terms of disability. It's almost enough to make me want to re-read the books.

Elizabeth and Linda, I am glad you will be getting an air conditioner. And Fran hardly put up a fuss at all! Maybe she is grudgingly trying to change her image.

Kathz said...

Linda, I know something of what you feel about the difficulty of balancing work, housework and the needs of people you love - though in my case it's teenage children. I would so love to have a little while to devote myself to just one of my responsibilities, but it never happens like that and the demands seem to get heavier and heavier. But of course one day the children will leave home (and I'll miss them). It's both better and harder for you - better because you have a spouse to come home to and harder because you have to see Beth in such pain. I can't suggest any solution but I think Beth and you have provided the nearest thing there is - remembering the great love you share. And I think that taking some time off - having a drink, seeing squirrels, reading the paper - is vital. Some days I reckon that 10 minutes on a sudoku is all that keeps me going. And yet, to most people, my life would look pretty easy.

Love and best wishes to you both.

anabel said...

It seems you both are pretty good at communication and taking the time to check internally.

It's so obvious how much you love each other.

SharonMV said...

Hi Linda,

Please tell Elizabeth that she has given me many gifts in just the few months I have known her. My life is changing, and it is due in part to you & Elizabeth. Friendship, honesty & caring are precious stuff, wondrous when shared so freely. She brought travel and adventure back into my life. And she sent me another postcard recently when she knew that I was feeling low. I have it on a table right next to the bed to cheer me when I'm sick.

Oh Linda, it's a sad & hard thing that not only do we have to deal with all the pain & illness, but also the toll it takes on our relationships. It is hard for you, I know that Dennis has many of the same worries & resentments. Worry about medical costs & benefits. I know Dennis has these same worries. Once we did loose our benefits when Dennis lost his job about 4 years ago. It was pretty scary, but we were able to keep our health insurance temporarily & pay the premium ourselves. It was scary as even then my meds & care were quite costly, but Dennis got another job within a few months & we have good insurance. It's hard being the sick one too. Sometimes it takes everything I have to get through the day, and I don't have much left to do things for him. It's so good that you two talked about it rather than let these worries & resentments grow. I love that elizabeth made such a huge effort to organize & clean the house and that you understood how much it meant.
And I'm so glad your getting a better air conditioner!!

Well, I'd better go & try to get some sleep. Good night,


rachelcreative said...

Great post Linda. Struggling to say anything sensible. Relate to a lot of it.

Hubbie and I try to think of it as me and him against this illness. His gifts to me, like yours to Elizabeth, are in the everyday and the small details and mean so much. Likewise from me to him.

Happy drinking!

You two have a date and remember how much you love each other and how you are fighting together.

FridaWrites said...

Linda, your list sounds helpful since it allows you to realize exactly the issues that need to be addressed. I wish you had the family/friend support locally that we do. With friends doing some of my chauffering to drs. right now, that gives my husband more time for work and cuts into his already very limited personal time less. I sense he needs more downtime too, even though I am still clamoring to get a few things done. It's terribly frustrating not to be able to pitch in myself more. It is amazing how getting one area or one project tackled helps us tackle other projects. If *anyone* volunteers an "if you need anything..." statement, put them to work. Have a list ready to give people some options in case some tasks are ones they can't do as easily (some prefer driving and errands, others cooking, others with house "pickup").

Elizabeth, your lively presence and your thoughtful writing are a gift to each and every one of us every day. Of course people want to give back to you! I suspect many of us would be helping you out if we lived locally.

Great news with the air conditioning! It's only June 1, so hoping this keeps you much cooler and more comfortable this summer.

Heather said...

Hey Linda -- caregiver guilt sucks. And I agree with Neil: I think we're here for both of you. What Elizabeth is doing is hard. What you are doing is hard.

Folding laundry: maybe that's something one of the home care people could do. It's one of the household chores that can take creep up on you to the point that you spend more time thinking about not having folded the damned clothes than it takes to actually fold the stuff.

And Elizabeth: accepting a gift can be as hard as accepting a compliment. Maybe there's grace in the giving and in the receiving.

I have to go now: need to do some research to see if there's such a thing as a Hello Kitty Air Conditioner.

Dave Hingsburger said...

Linda, I don't know about others, but I come here to hear your story too ... Joe has never told me about his frustrations and angers regarding how my needs become his duties. I can see on his face sometimes that he wishes I could 'just do it myself' but he'd never say it. I appreciate hearing what may be his voice through you. Hope you both had an awesome time drinking and finding air conditioning. KYAL (Know You Are Loved) Dave

Tammy said...

Linda: The strength in admitting that you are human, is an amazing thing about you. Caring for someone you love so deeply is the most difficult and stressful task that one can take on. I am so impressed that you were able to speak to Elizabeth about it and have a dialog about it. What she did for you, giving you that bit of peace at home, showed she listened and cared. You two are an amazing couple.
Elizabeth: I hope the pain gets better. You deserve every wonderful gift you receive and many, many more. It's Karma, you are just receiving back for all that goodness you give out!

Maggie said...

Hello to you both-Linda it takes a lot to admit your frustration and your situation and to ask for help. You and Beth have a wonderful relationship and yet not every wonderful relationship is without strugles, challenges, and trimuph. You have a great support network both on line and in real life. I know Cheryl will get on the boat to help out and so will I. Medical appointments, giving you a break or staying with Beth because you can't because work calls just say the word.

Beth-you deserve gifts because you share your gifts with others. Even though you may not be able to do everything you used to do, you can still share your mind, your creativity, and your excitement. You inspire (ugh, the Word!) folks to get out and get crazy and sometimes it's just that push we need.
Hope you're both having a good Sunday.

Denise said...

I'm glad to hear you were able to work constructively through your feelings about being a caretaker. It's a tough job! I think it's odd that family leave is guaranteed for children and parents but not a dependent spouse. I guess that's another facet of Victoria being unsupportive of people with disabilities and their families. *sigh*

Your frank discussions of what it is like to have the rug pulled out from under you in a myriad of slow, jerky steps have been an eye-opener for me. While I don't know you personally at all, I would happily send you a small shiny to thank you for the effect you've had in expanding my consciousness.

For example, it now bothers me that my house is wheelchair-inaccessible, and I notice when businesses are or aren't. It's something I'll look for in my next residence, because I want my home to be a welcoming place for everyone I know. What's less welcoming than, "Sorry, the bathroom's up there (points up mountain)"? Seeing how you carve out agency and empowerment for yourself helps me see the difference between helping and patronizing. And your day to day doings remind me that small things still matter.

I've learned and grown by listening to your stories. Thank you for sharing your struggles and triumphs.

Elizabeth McClung said...

Linda here...

veralidaine: Interesting point of view. I had never thought of Sam and Frodo in a caregiver/cared role, more as a same sex relationship. At least the movies made it appear that way to me.

Cheryl: Thanks Cheryl. I know you're there for us... that's why I put you as an emergency contact for Lifeline. That okay with you?

Our drinking experience was a bit unusual last night. It was too late for food, other than some fries. We had just settled in when they started playing music bingo. I've never experienced this, but it had most everyone in the pub singing or dancing along. Watching 50+ drunk people acting out YMCA was quite something. We didn't have a chance to get much talking in. I finally gave in and started singing some of the words, Beth said she'd need more beer in her before that happened. We decided to leave after the one drink.

em: I think there's still a lot of emotional work to be done. Now that I've identified some of them, what am I going to do about it?! More discussions with Elizabeth and also with my counsellor.

Neil: Thanks for your permission to vent.

Elizabeth slept better last night, BTW.

Yanub: "For someone who claims to be self-centered, Elizabeth does a very poor job of being selfish." I think you're right about Elizabeth. And yes, it was a wonderful gift that she gave me.

Kathz: Hello fellow sudoku lover!! One of the things I love about sudoku is that there are rules and as long as you use some logic everything will fall in to place. Just doesn't happen in real life for me. The logic or the falling into place!

Thanks for sharing your struggle as a single-mom. I appreciate it. Your comment about us remembering the love we share is an important one. We can get mad at each other, vent about things and in the midst of it, it seems like how will things ever be resolved, but then because we love each other we find a way to make things right again.

anabel: Elizabeth is way better checking internally. I'll only go there kicking and screaming or out of desperation.

It's one of the challenges of writing this blog. Elizabeth's readers value her honesty in emotions so I am encouraged to write with the same honesty.

Sharonmv: Thanks for sharing how things are in your household. That must have been a scary and stressful time when Dennis was without a job. Paying premiums is expensive, but sounds like it was worth it. I'm glad he's settled in a job with great benefits now.

rachelcreative: What a great way of looking at things - the two of you fighting against the illness.

fridawrites: I'm glad you've got people helping you with things. Actually, Elizabeth's parents always say... "if there's anything you need..." to me quite often and when they said it on Friday I told them I'd take them up on their offer and it might be something stupid like washing the van (it desperately needs it) and they jumped at the idea. Her dad likes doing things so maybe I'll come up with a list. Her mom used to drive Elizabeth to appointments but stopped when they gave us the van. They are the emergency back up if I can't make an appointment - but I try to make them all as Elizabeth can't always remember everything. Between the two of us we can remember the majority of the conversation.

Heather: You made me chuckle with your 'hello kitty air conditioner' comment. Thanks.

About folding the laundry. I'm embarrassed to say the home care workers do fold it, but because it sits in piles and we have to rummage through them to find things, they become unfolded and it all needs to be refolded.

Dave: I'm glad I could provide you with some insight - but I'd wager it's best to hear it straight from the horse's mouth so to speak.

How long has Joe been in the care giver's role?

BTW, I read your children's book - thanks for giving it to us. I thought it was excellent - will send an email directly to you about it another time.

Tammy: Karma! I think that's it!

Maggie: Very well said. Great relationships do have struggles, challenges and triumphs.

I appreciate your and Cheryl's physical and emotional support. We may just take you up on the offer to attend doctor's appointments.

cheryl g said...

Of course it's OK to put me as an emergency contact for lifeline. Did you give them both my home and work numbers?

Raccoon said...

Yay! Air-conditioner!

You mean that, for the last two months, my trying to think of a gift for you is something you didn't want me to do?

Tough cookies, kid.

Gifting is something you should do because you want to, not out of obligation.

Neil said...

I'd really love to hear a report about a doctor's visit where the Dr. is dissing someone about heat intolerance, and Cheryl or Maggie pulls out her EMT certificate and says, "*I* am the one who treated her!" A photo of the doctor's face would be priceless, I'm sure!

"We can get mad at each other, vent about things and in the midst of it, it seems like how will things ever be resolved, but then because we love each other we find a way to make things right again." - A suggestion, if I may: It's okay to be upset with each other and it's okay to argue with each other.

The key word above is "with." Look at it as arguing WITH the other to reach an agreement where neither loses. Just be sure you're not arguing AGAINST the other.

It's a difference of semantics, perhaps, but when you take care to recognize the other has a valid point of view, you can argue and yell, and clear the air. Then the making up is easier.

We're happy to hear Elizabeth had a relatively good night.

Lots of love and hugs to both of you. Elizabeth, you married a fine writer!


FridaWrites said...

Yes, give her dad lots and lots of work, and anyone else (I hope people start volunteering for you in this way, it would give you both more time for one another and less exhaustion). I understand you wanting to be at appointments as well--it really is difficult to remember everything that's said during an appt, and having an extra memory does come in handy a lot.

I'm glad Cheryl is not too far away and is there for you! She exemplifies the real Christianity Elizabeth writes about, being there when she asked for a sister and continuing to be there, a genuine friend.

saraarts said...

"if someone had a ladder long enough or was willing to risk scaling our building I think they’d deserve a reward of some sort"

Seriously. And of course, NO ONE would see them. NO ONE. Because they'd also be totally invisible as well as determined thieves.

Elizabeth McClung said...

Linda here...

Denise: Very odd indeed. My hope is that with an aging population and employees working past retirement age, this policy may change out of sheer necessity. With the labour shortage changing the policy may retain some employees.

Raccoon: Thanks for coming up with a great gift. I agree, giving gifts is something a person wants to do, not an obligation. In Japan Elizabeth kept buying things and I'm like "but we don't need that" and she's like "but I can give it to someone for a gift." I'm like, "Who?" and she replies "I'll think of someone. We don't have to have someone in mind right away. We can always save them for a rainy day." I kind of grumbled about spending all this money on things for other people and not for her, but she got more enjoyment out of buying gifts than buying for herself. I was humbled.

Neil: semantics, yes, but a good point nonetheless.

saraarts: yup, completely invisible.

Dawn Allenbach said...

Please don't ever think that we don't want to hear your thoughts, too, Linda. I for one am grateful for you insights on everything.

YAY for getting an AC!