Conscious Departures

Don’t Wait to Ask For Help July 20, 2012

I’m a bit delinquent with this post. Last weekend I made the really bad decision to heat up a can of Indian food which had some white fuzz on top. I was so hungry I convinced myself that scraping off the fuzz would be fine. It wasn’t. Within a few hours I was slammed with a severe case of food poisoning and suffered through it till early the next morning. Now after several days I am almost fully recovered. The only help I managed to ask for during this ordeal was a cryptic email to a friend saying “check on me Tuesday and make sure I’m still alive”.  Of course the person I chose only checks email when the comet Kohoutek rounds the sun, so thankfully I’m still here.

All this got me thinking about my abysmal track record of asking for help. One thing I was so sure I learned during my caregiving time was that no matter what, when help is needed, ask for it. As a matter of fact, don’t even wait until that time, be way ahead of the curve.

Although I eventually did ask for help from friends and family, while caregiving K, it was a bit too late in the process. By the time I wised up to the fact that I was in over my head, getting help was like chasing a shadow. In the end it all worked out fine but that was more God’s mercy on K than any of my preparations.

Because of my penchant for big-picture thinking I hardly considered the myriad of detail involved in caregiving. I work from home, and so figured I’d always be available. I make a habit of getting up from my desk often, (especially after having read so many articles that excessive sitting is as deadly as smoking). So checking on K or spending a little time with her here and there during the day was not out of line with my normal activities. Cooking her a little something or running an errand was very doable during work hours. And for a while that was fine.

Most people in a non-professional caregiving situation are also making sure they are able to pay the mortgage/rent, buy food, pay the gushing river of extra medical expenses and so on. The same went for me. I had to make sure we had adequate money coming in. As someone self employed I may have the luxury of flexibility but the grocery store still wants me to pay something for its items.

There are so many deatails with caregiving that take time and focus. For instance, there are meds to be taken. My friend David, who passed away from lung cancer, took many different meds at various hours. He almost needed a spreadsheet to track it. He was not only challenged to remember what to take when, but after a while was unable to remember to take anything at all. Thankfully his partner and primary caregiver, who had to spend most days away at work, developed a clever system to make it easy for him and a way for her to check he was taking what he needed.

With caregiving there’s always the daily dose of the unexpected. K wanted to maintain as much independence as possible, no matter how dangerous it was. When she was too frail to walk well she insisted on groping her way around the house unassisted. Her system comprised of using walls for support. I can’t tell you how disturbing this was for me whenever I discovered her doing this. I was told many times by the hospice nurses that if she broke a bone the pain would be excruciating, may not heal and can even cause her death.

Are you starting to get the picture? How can you monitor things like this and still manage everything else? And I haven’t even started on how the drugs and disease begins to affect someone’s body gifting you other chores that need attention around the clock.

So what would I do different in terms of getting help? First, I would have talked this over with K early on, when she was strong. Although we did ask professionals what to expect for K, we never asked what the primary caregiver should expect. I remember the hospice people in our initial orientation asking me several times “are you sure you want to be the primary caregiver?” That should have been a clue.

Along with the professionals I could have also asked the same question in an online forum to people who’ve already experienced caregiving or are presently doing it.  Having a community of people blogging and commenting about their caregiving experience is a real treasure. We are so lucky to have such resources and connections to people just a mouse click away. Sure there are always charlatans, but that goes for professionals too. There are great people out there sharing, in real time, their experiences who are happy to respond with volumes of information just for the asking.

With a little preparation in this way K and I could have had a meaningful conversation about my role and what I’d need. As it was, I had that conversation when she was weak and foggy; that didn’t work out so well. By then she didn’t want people around, except the hospice. And as great as hospice care is, they are not our personally dedicated, 24/7 in-house caregiving team. Yes, they are responsive to any call or emergency. Yes, they are fantastic, but they are taking care of many other people around the city and have to manage all of them with a small team and whatever budget they have.

Anyway, after having the “caregiver needs” conversation and making sure we’re both on the same page, I’d have us assemble a team of people we knew and trusted who were available, understood the situation and were willing to help in specific ways. And I emphasize the word “specific”.

Although there were people who offered to help all I could ever do was thank them and say “great, if we need something we’ll call.” I could never really think of anything we’d need. When I finally realized I needed help no one was around. Those who sincerely offered to travel and help, like K’s sister, were at a standstill because K was adamant she didn’t want anyone to come over. This wasn’t selfishness on her part, she was just not able to fully grasp what was happening for me and didn’t want to burden others with her condition. At one point I eventually overrode her wishes because the need was flashing as big as a Vegas neon sign, and I knew little time was left. Thankfully I did because upon seeing her sister, K smiled one of the most beautiful and heart melting smiles I had ever seen in my life. I still shudder to think that moment could have been missed.

Want to check out a couple of caregiver forums to get a feel for who’s out there?

The Family Caregiver Forum:  The NFCA is in my resource list. It’s a good place to go for all kinds of caregiver information and they have a simple forum for caregiver issues. In their caregiver forum you will find 4 categories of discussions with participation from both professionals and non-professionals. Categories are “Caregiver Depression”, “Advice to Other Caregivers”, “Working Through Your Frustration”, “Getting Doctors to Take Notice”.

The Elder Care Forum : This looks like a wonderful forum if you are taking care of someone aged. The forum is full of topics, some of them very comfy and community oriented such as “We Laugh to Survive”, where you can post “dumb jokes”. But, there’s a lot more to explore than jokes with topics relating to dementia, daily challenges, onset of Alzheimer’s, and even an “Anger Wall”.

There’s a lot more out there. Just type “online forums for caregiving” into Google and you’ll get about 2 million pages. Are there some forums you are turning to that others can benefit from? Please share any great forums you’ve been using or discovered.