Browsing the Blogs

Spent some time on Sunday and again this morning looking for blogs about caregiving. Started by searching on Google for "caregiver blog." Looked around at the sites that came up on the first 3 pages of results. Of the blogs I found, almost all were stale, with the latest post often more than 6 months prior. Found one "caregivingly yours," see link to the side, that looks like it's pretty current and regularly maintained by a husband whose wife has MS. From his site, I started prowling around Blog links from the other side of the caregiver/caregivee equation -- those with MS.

There are a LOT of blogs from folks with MS. Lots are very current with active posters. Even more importantly, the content was interesting, and I'll be visiting a number of these again. I've added some to my blog roll in case you want to check them out.

Skip doesn't talk much about herself or what she's experiencing with her MS. She's intensely private, even with me. Reading what others are going through doesn't tell me what is going on in her head, but it can give me some insight into how it feels to have MS.

I'm trying not to draw too many conclusions about the plethora of active blogs from those with MS versus those who give care (regardless of the malady of the caregivee). I'm sure there's an element of availability/time to it. The blogs I've been looking at from those with MS seem to be written primarily by individuals who no longer work. And, caregivers often work at paying jobs in addition to the non-paying caregiver job, so probably have less time available.

I wonder if there's something else at work, though. If you have MS, it's not your fault, it's externally imposed on you. Nothing to feel guilty about. I bet lots of caregivers have mixed feelings about their roles and how they "do" in them. I recognize that my caregiving to Skip is a huge gift to her. However, I still have feelings of guilt (for getting cranky, especially), anger, resentment, etc. that I harbor. A real mixed bag. Not something you necessarily want to expose to the light of day. I'm sure I'm not alone in the caregiving world. Just go ahead and Google the phrase "caregiver anger," to see the truth of what I'm saying.

If you read this post and are aware of some active caregiver blogs, please add a comment and point me in their direction. Thanks!

I'm Not Always Cranky: Savor the Small Stuff

I realized my first post on this subject was very general, focused on the "macro" rather than the more "micro," or day-to-day, reality.

Our lives really center around our home. I work at home, as I've mentioned, so I'm here ALL the time. Skip generally leaves the house only once a week on average. Fortunately, we have a lovely house that is set up pretty well for a wheelchair user.

Skip is generally a good-natured person who, despite all the damage of MS, maintains a very positive attitude most of the time. We love to sing to each other, to the dogs, to the air. Lots of singing in the house throughout the morning (especially when I don't have a conference call going). The songs are just nonsense about whatever is currently going on; sung to the melody of a few specific songs, such as "Winter Wonderland." When I'm not displaying some of the crankiness this blog talks about, we get along very well and love each other's company. Even after all these years, she's the person I most want to spend my time with.

The dogs add so much joy to our lives. Total and utter love given by them and to them. They love to be with us and with each other. But, they have very different interests. Sally is totally focused on the creatures outdoors, having certain spots in the house to spy them. In the warmer weather, she is constantly at the kitchen door asking to go out to try her hand at squirrel chasing. Ruby is a total couch potato all day, looking for things to eat and chew but otherwise relaxing in her bed next to Skip's wheelchair. At bedtime, she comes to life, picking a toy for us to throw during our evening "get Skip into bed" routine.

Lots of love in the house. And, isn't that what it's all about ... giving and receiving love?

I'm Not Always Cranky

In fact, I have a pretty positive outlook on life and feel very lucky overall. Privileged is how I often describe my life, and I'd say it's quite accurate.

The last year has really put my attitude to the test. It wasn't just the daily demands of caregiving, of course. The super-sized recession, market meltdown, concerns about my job (surviving two rounds of layoffs) all created stress and impacted my perspective, legitimately so.

But, I do still have a job, and one that brings some measure of professional and monetary satisfaction. I won't retire as early as I thought I would, but I will someday. We have leadership in this country now that I can respect and I think we're on the right track for the economy to come back, though slowly.

At present, I'm working on bolstering up my positive attitude so it's with me more often than it's not. Some of the things that are helping:

• Trying to take better care of myself by healthy eating
• Recognizing I can't control everything
• Trying not to be too sensitive

One final note ... this post is sort of ironic for me right now. I started writing it the other day and decided to finish it up this morning. Well, I've been a cranky bitch all morning. Happily, writing this post has helped me to come out of that cranky pit. Yay!

Cranky Reason #5: I Get Scared

Reason #5: I get scared. I don't know if this happens to my fellow caregivers, but sometimes I get scared. It could be that I see a long series of ever-greater demands and needs pressing down on me. It could be I have dread about the future and the need at hand seems to presage more bad things. For instance, with Skip's growing hand weakness, I sometimes get cranky when she drops her fork. Not because it's so hard to pick it up and give it back. No, the fork is a symbol ... the hands are weakening and the downstream consequences of that could be very bad.

De-cranky strategy: No good ideas on this one at present. I thought admitting the fear would help, but it hasn't really.

A Different Kind of Day

I've been working from home for about 2 years now. With a phone, headset, laptop and broadband internet connection, I can work pretty much anywhere in the world. Fortunately, that "anywhere" is my kitchen table. (I was going to convert an unused bedroom to an office but I decided after about 3 months working at home that I like being in the center of activity, so the kitchen table has been completely taken over as my work desk.)

Today, I spent the day at the office for an all-day meeting. How different my routine is now from the old days when I commuted to the office every day. In other jobs, I used to drive 20 miles each way, work 50-60+ hours per week and wasn't home much except for the weekends. In addition to physically working in the office, I built and maintained more social relationships with colleagues. I spoke to Skip on the phone a few times a day. Occasionally, as Skip's disease progressed, I'd have to run home because she'd fallen and needed help getting up.

It was a bit of a drag having to get us all going quite early, dress up in nice clothes and head out around 8:30 for the office. We had to have an aide from an agency in for 2 hours in the a.m. for the heavy-duty care needed in the morning. Skip's regular aide came a bit earlier than normal so she'd only be alone for a short time in the day.

All-in-all, it was actually a bit relaxing being in the office. When I work from home, I'm basically managing two jobs at once. Today, I knew Skip was in good hands and I didn't worry about her one bit (I'm not much of a worrier, actually). So, I was just Cranky the employee, not the job-juggler.

So what do I take away from this? A change of pace can be a good way to 1) get a respite from some care responsibilities and 2) remind me of all the reasons I far and away prefer to work at home.

Cranky Reason #4: Our Priorities Conflict

Reason #4: we have differing priorities. Well, of course we do, we're different people, no matter how much our boundaries may have blurred the last 27+ years. The reason this is an issue for Skip and me is that, as I noted in the first post of this blog, I am her "pair of hands" for many tasks. When there's something she wants done that's a high priority, but I either don't value it or, worse, resent having to do it, it's a set-up for crankiness on both our parts.

De-cranky strategy: explain our feelings to each other. I think sometimes we take for granted that we know each other inside out after all these years, so believe we know what makes the other tick. When Skip explained to me her feelings about birdwatching and all the pleasure it brought her, it made the putting out of seed, peanuts, bread and corn cobs (yes, all these things are distributed outside every second day) for the creatures of the forest much easier for me. Before it was more than a nuisance, as buying all this stuff adds up and it encourages squirrels to hang out around us ... squirrels that do a lot of damage. I'm still not happy about this task, but I understand how much Skip values it, so I don't resent it anymore.

Cranky Reason #3: It's a Habit

Reason #3: because it's what I do. When I get overwhelmed or have too many conflicting demands, or frustrated or, frankly, whatever, I choose to be cranky. Some requests that might be easily handled when i'm in a little better frame of mind get a bad reaction because it's easy and lazy.

De-cranky strategy: Honestly, I think this will be the hardest reason to break. It's like my brain has a burned-in pathway to the cranky reaction and that's one hard pathway to reprogram. This blog, where I'm thinking more about the "whys" of what I do, is probably the best strategy for getting out of this nasty habit. Conscious thought about behaviors is, for me, the best way to recognize the stupid or non-productive things I'm doing and help me seek alternatives.

Tonight Was Bad

Was remarkably happy and upbeat through the late afternoon and early evening. Wrapped up work for the week. Then, walked around the house singing, doing some basic chores and getting organized (which always feels good). Sat down on the couch after dinner, watching tv and playing some poker. Fell asleep on the couch around 9:30.

When Skip woke me up so we could go to bed around 11, she seemed pokey and depressed. For some reason, her mental state was irritating. That, combined with waking up from a sound sleep, I went straight past cranky, right to angry. Not rational or fair to her.

Shortly after we got into bed, I apologized, explained my feelings, so we made up.

Of course, now, it's 4am ET and I'm still awake...

Cranky Reason #2: It's After Dark

Reason #2: It's dark outside. Yes, it's as simple as that. As the day progresses, my patience, energy and sparkiness fade. As these resources wane, so does my ability to help with good grace. A request that would have been readily accomodated at 9am gets a far less receptive response at 9pm. As these build up, so can my crankiness.

De-crank strategy: Well, I can't stop helping in the evenings, so how best to keep up the spirits? Once I've settled in on the couch in the living room, laptop on lap, it's hardest for me to assist. So, I can check in with Skip between the time the dishes are done and the butt hits the couch. "Anything else you need, hon?" A bottle of water or a snack fetched then is much easier than later, when I'm playing some poker or reading a good book.

Cranky Reason #1: Work and Caregiving Conflicts

So why do I get cranky in my caregiving role?

Reason #1: conflicts between work and caregiving. I work from home, my job is fairly demanding. Lots of conference calls and time-sensitive tasks to complete. When the demands between these two facets of my life conflict, crankiness is often the result. It can be through no fault of Skip's, if work is burning hot, simple requests from her can be enough to trigger it. Or, if I'm feeling like I'm being interrupted a lot for a steady stream of low-priority requests, that can be irking as well. Over all of this is the concern that I have of needing to accomplish as much at home as I'd get done in the office; I can't have too many caregiving interruptions during the day or my productivity is impacted.

De-crank strategy: when work is a pressure-cooker, I give Skip a heads up so she knows I may blow. She can be pretty understanding and try to ramp back the requests, but this only goes so far. Even on a normal day, when I feel there's too many requests, I can try to defuse my feelings of irritation by joking about it so she's aware of my frustrations without my lecturing.

Big Mitts

This morning while I was helping Skip get dressed, she remarked on my big mitts. That's what she calls my hands, "Big Mitts." I am fortunate to have large hands for a woman (goes with the overall size, as I'm almost 6' tall). And, they're pretty strong, too.

When I was younger, these mitts were good for backrubs. Shoulder problems of middle-age have killed that. But, they're still good tools for a caregiver. Good for lifting limbs, rubbing in cream, giving a calming touch and all manner of things. I'm lucky to have them.

Caregiving

Obviously, caregiving isn't my only role. But it is the role that's most challenging for me. I think I'm naturally inclined to be a bit lazy and selfish, and the needs of Skip often conflict with those tendencies.

Multiple sclerosis is a progressive disease. Skip has the kind that doesn't come and go (relapsing-remitting), instead hers just keeps coming (chronic progressive). So, each bit of capability lost is gone forever. I'll talk about the progression more in the future.

Skip's current state is that she can't walk, is very weak and experiences fatigue alarmingly quickly. Her hands work, but not very well, so if she doesn't concentrate on holding a spoon or fork, she often drops it. They do work well enough to maneuver the joystick on her wheelchair, though; she's very good at that. While MS can affect cognitive functioning, she is free of any brain impairments.

As a caregiver, I'm on the job all day, every day. We do have an aide (who, for Skip, is very much a friend) who works about 15 hours a week, during which I get a break. Otherwise, it's Cranky on the spot 24 x 7.

Caregiving isn't just about taking care of the other person physically, though that's important. It is also doing everything around the house that would otherwise be shared in the couple. There's no one to share the laundry, food prep and cleanup with, for example. And, it also involves being your partner's "pair of hands" for things that are important to her but which you'd never do yourself. For example, Skip is into birds, squirrels and other creatures that frequent birdfeeders. She can't fill the feeders herself, so this is my job. Because it's a priority for her, but not for me, this can often be a source of tension and disagreement for us.

Another component of caregiving is problem-solving. As Skip has gone further downhill over the years, we've needed to find new solutions and ways of doing things. So, in the larger sense, we keep having to face new problems and find ways to handle them. In the micro sense, we occasionally have problems that hit because of a fall or other temporary issue that needs to be solved right then and there.

I am a damn good caregiver. But I get cranky.

Background

Some info about me:

• early 50s
• with partner (wife since legal in 2004) for almost 28 years
• have 2 dogs
• work from home

Some info about my wife:

• early 50s
• has had MS for 20+ years
• retired soon after MS diagnosis
• hasn't walked even a step in about 5 years

First Post

Well, here I go. I've been thinking about blogging for a while. Why?

• As a caregiver to my wife with MS, I've faced a lot of different challenges and met them all with various degrees of success. What we've found out and how we've handled things may help others.
• I process information and think things through out loud, either by talking or writing. There's a lot of crap going on in my life now and over the last year that I need to think through. This blog is going to include some of that.
• Despite a full-time job and full-time caregiving responsibilites, I actually have a good amount of free time. Doing this helps avoid that to-do list!
• I've scanned around the web for caregiving stuff that I found useful. Nothing really sang to me; maybe that's the case for you. Hoping this strikes a chord with you.