Best Of!

Thank you once again to Healthline.com for voting my blog one of the 25 Best of 2015! What an honor to be consistently included in this talented group.

I urge you to check out the list of blogs since there are a few different ones this year. I am also heartened to see that there are a few Lewy body blogs - more than I have ever seen before.

www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs

Thank you to Healthline for making us bloggers available as a resource to your readers!

The Symptoms of Grief.

I've been co-facilitating another Grief group through the hospice organization I volunteer for. The participants of these groups are always so different in terms of age, and which of their loved ones died, and how. The thing that unites them, of course, is that they are grieving a loss. We have an even mix in the group of those who have lost a spouse and those who have lost a parent; however, all of them died after some sort of illness, and most of them were on hospice at time of death. I make this distinction because we have had people with sudden losses, accidental or otherwise, and it can make a difference in the grief, to a certain extent.

I've done these groups before, and I tell my husband a little bit about them in the six weeks they usually last. The other day, though, he asked me why people attend the group, which I thought was an interesting question. We don't talk much about grieving and loss in this country, which is to our detriment, I think. Unless they have done some research or reading or been exposed to grief before, most people don't know much about it, or what it looks like, or the course it can take. They can be confused at some of the things they think and feel after a loss. They can also be confused, and sometimes angry, at the response they get from other people, even those closest to them.

We don't teach people that there is no "normal" when it comes to grief. Pretty much everything that people feel is a part of grief. We don't tell people that grief can be a physical process. It can make you feel exhausted all the time, it can give you energy, it can make you cry a lot - or not, it can make you feel achy and sick, spacey and forgetful and disoriented. It can make driving difficult, or doing other tasks, or keeping a schedule - some people have said that they drive right past their houses, miss appointments, and forget how to do things they've done forever. Different people handle grief differently; some may find they get through the process quickly and get back to function, others take longer.

We talk about "ambiguous loss" and anticipatory grief, which essentially means that people have had at least a little time to prepare for the loss and start their grieving process. This can be helpful but it doesn't mean that they won't feel strongly when the actual death occurs. Loss can also bring out anger - at the loved one, at God, the family, doctors, or friends - and guilt at being the survivor, or because one feels they didn't do enough somehow. We also don't realize that our roles will change after a loss. We may lose roles we held, such as caregiver or spouse, and take on new ones, such as new head of family. We also may have to take on the tasks and specialties that the loved one did, since they are no longer there.

Unfortunately, we also don't teach people how to respond when someone they know suffers a loss, which leads to confusion and distress when the griever doesn't feel supported. People often don't know what to do, or how to help, so they disappear from the grievers life. Alternatively, they may be over-helpful, or bring up their own experiences with grief, or have too many suggestions on how the griever should be feeling or what they should do. People often feel uncomfortable witnessing grief and may want the griever to "be strong" or "get over it" - basically to be the person they used to be. I tell everyone who asks that the best thing you can do for a friend who is grieving is just to be there: be the voice on the end of the phone; sit quietly with them and listen to anything they have to say; make concrete offers of help and then follow up.

The more we talk about grief and loss, the better. Grief groups help people talk about their grief, their loved one, and their lives moving on. Groups help give people the tools to work with their grief, and all future losses. And, I realized as I answered my husband, learning about their own loss and what grief looks like, means they can spread the word and help the next person who suffers a loss. It feels good to be training unofficial grief counselors, who can help spread the word about grief and how to deal with it.

Presence.

It’s been a long time since I cared for Dad on a day-to-day basis; something like eight years now. Time, of course, blurs events so that when we look back on them, it’s hard to remember exactly what we felt or experienced at the time. I tell stories about me and Dad and what happened, but they’ve become flat narratives for me and they don’t really affect me anymore. Every now and then, however, usually when I meet a caregiver who is right in the thick of the tough stuff, I remember all the feelings and things I went through.

I used to spend from Sunday afternoon through late Tuesday evening with Dad, living in his house, responsible for his well-being, entertainment, and physical and mental health. He was still fairly lucid, and could still take care of a lot of his own self-care, but I cooked, and drove, and cleaned, and shopped, and entertained. I spent a lot of time thinking up activities for us to do to avoid boredom, and most of the time I succeeded. It was exhausting, however, and when I think back and wonder why it was so exhausting, I realize that it was because I had to be so “present” – all the time.

If you think about it, most of us are fully “present” only periodically throughout the day. Much of the time, we are a little checked out, doing things on auto-pilot comfortably. At other times, we are relaxing, letting our minds and bodies rest. However, when you are a caregiver (and, probably, a parent) you are “on” almost all of the time. You are forced to be present and aware and prepared for anything your care receiver can get up to, including disappearing in a crowded mall, which happened to me once or twice with Dad.

Even when Dad was present and accounted for, I had to be available to him mentally and emotionally. I was always making sure my attitude was good and I was listening to what he was saying and what he needed. I was interpreting his repeated sentences, and garbled phrases for what he was actually trying to say to me. I was making sure I was always aware of the atmosphere and environment around us, including whether he was doing something that might freak someone out, or someone else was doing something that might freak him out. Even just being at home, or sleeping, was tough because I was always waking up hearing things, or making sure he was safe and not leaving appliances on. And, in our particular situation, I was worried about something vital falling off the house, seeing as it was in such poor repair!

Of course, cooking, cleaning, shopping, and dressing someone are all tiring but I remember the being present part as the most exhausting. I wonder if that’s how it is for other caregivers? I remember going home exhausted on Tuesday evening, and being tired and a little out of it on Wednesdays. And I’m one of the lucky ones; I could go somewhere else after a few days, unlike many other full-time, family caregivers! These days, I see Dad for a few hours a week, and he doesn’t move or talk much, so I forget how things used to be.

I really urge caregivers to be aware of this hyper-awareness because it’s something you just get used to doing and it can totally wear you out before you realized what’s happening. And for non-caregivers, who may wonder why their caregiver friends are so exhausted even though they’ve just been sitting around at home with their care receiver. Physically, they might not be doing much, but mentally and emotionally, they’re getting a full-on workout: being “present!”