Wednesday, July 30, 2014

Caregiver Space.

This is a link to an essay I wrote for The Caregiver Space, an amazing blog/Facebook page that is all about supporting and informing caregivers, with lots of great posts, opinions, articles, etc.
In my essay, I talk about the benefit of support groups for those of us walking the caregiving road. I focus on my Lewy Body groups and how beneficial it has been for my members to be in a group of people that understand their particular struggle. However, I wanted to add that whatever dementia or illness your loved one, or maybe you, suffers from, a support group is a must-do. The balm, fellowship, and great info that you'll find there will be life-changing.
I urge all caregivers to find a group near you, and if there isn't one, and, tragically, there still aren't enough, check out the many on-line forums, chat rooms, blogs, and Facebook pages around. Memory People on Facebook is one such amazing group - it is a closed group but you just have to ask to join and someone will contact you.
I hope you go to check out my essay, but stay for the content and the comfort that The Caregiver Space provides. 

Wednesday, July 23, 2014

Sharing Shakespeare.

My husband is performing in Henry IV, part 1 at the Colorado Shakespeare Festival this month, and it has been all Shakespeare all the time for a few weeks now. So it wasn’t surprising that when I went to the bookstore the other day to find something new to read to Dad, I thought of picking up a collection of the Bard’s plays, a greatest hits, if I could find it, or his Sonnets. Reading to Dad has been so rewarding, lately, but I’m getting tired of the Bible, although the Psalms are always a good standby.

In the end, the bookstore didn’t have a good complete collection, only the plays individually, but I ended up getting a book of poetry instead. Poetry for Hard Times, a collection edited by Garrison Keillor, one I’ve looked at before briefly and thought might be good for Dad. I also bought a copy of Thoreau’s Walden, which I have read before and thought Dad might enjoy hearing since he was something of a nature lover (and was big on simple living.)

The poetry collection turned out to be a winner; I knelt by Dad’s chair and leafed through it, picking out poems I liked or had seen before and reading them out. Surprisingly, Dad was very alert and seemed interested. He kept his eyes focused on my face, and I looked up often to smile at him. At times, I caught a faint smile on his face as he looked at me. I’m not sure if he was trying to figure out what I was doing or saying, or just happy to have company, but it was just so nice for me to have him so engaged. As I’ve said before, I doubt he knows who I am – if he does, he’s not saying – and while I came to terms with that a long time ago, it’s still nice to imagine he enjoys my presence.

It reminded me of a conversation I had with a caregiver a few days before. This person was describing how their sibling wouldn’t go see their parent with dementia because she “didn’t like seeing him like this – it’s too hard.” I know that people deal with the difficulty of having a loved one with dementia in their own way, so I won’t criticize, but being there with my Dad just made me realize once again; we don’t visit for us, we visit for them. In the end, it’s not about us, it’s about making our loved one feel connected to the world; giving them companionship and love; and affirming the invisible connection between us.

I had my issues with Dad in the past, and I would never judge other’s decisions to be part of a loved one’s life or not. I can only say it made me happy to read to my Dad and have him look me in the eyes and be present, if only briefly. I didn’t get to the Shakespeare, but I’m sure my husband will have a collection I can bring from home next time. But we did pretty well with a collection of poems – ultimately, it’s not the words that matter – it’s the reader saying them, and the listener receiving them.

Wednesday, July 16, 2014


In the last few months, the subject of sex has come up a lot in my discussions with caregivers, so when I saw a book about sexuality and dementia pop up on my Amazon list I was happy, hoping it would help me answer some of the concerns and questions I’d been presented with. It is an interesting topic because sex in normal life is a private, somewhat taboo topic; sex in dementia life can be even more difficult to talk about! But I’ve had several caregivers present different sexual situations involving their loved ones, and it seemed like a good thing to explore.
The desire for sexual intimacy doesn’t just stop when someone is diagnosed with dementia. Sometimes, sexual contact continues between caregiver and loved one late into the disease and that’s great, as long as everyone is fine with it. I’ve also talked to caregivers who wanted suggestions for how to avoid the sexual inclinations exhibited by their loved one; either toward themselves or towards the other parent, if the caregiver is an adult child of someone with dementia.

I gave the best answers I could to these requests for solutions to a delicate problem, but it made me realize that in all the books I’ve read on dementia, there hasn’t really been much discussion about how to deflect sexual advances carefully and tactfully. Some of the books cover sexual behaviors in facilities and how professional caregivers should handle it, but there wasn’t much for the family caregiver.
I had no problem with Dad having sex, as long as it was consensual (and I didn’t know about it!); in fact, when I toured facilities the first time, I asked all of them what their policy was on sexual relations between residents, whether they allowed them, and how they handled it. Since I knew that relationships in facilities between residents were possible, I wanted Dad to be in a place where it was okay to experience as much of the relationship as possible, should it happen. The subject of a relationship between Dad and a resident never came up - however, he did have a relationship with someone else.

A few years after my mom died, my father started dating a woman named Janet, who was a lovely individual, although she had some personal issues. I imagine they had an intimate relationship, not that I wanted to know about it, but they eventually broke up. After I moved in with Dad, unaware of his physical situation, she began sending him letters suggesting a renewal of their relationship. I met with her and told her about Dad’s illness, then we all had lunch together, which everyone enjoyed. Eventually, I hired her to be one of Dad’s informal caregivers; a few days a week she would take him out to lunch, or to her house, or on a walk with her dogs, etc.
The situation worked for a few years, until her mental issues began to intrude, making me concerned for Dad’s safety and my own sanity, and I fired her. (This story is detailed in my new book!) Until that time, I know that they enjoyed spending time together, and I suspect they resumed their intimate relationship, which I was fine with. Eventually, I suspect he lost that drive since he never really exhibited any sexual behavior to his caregivers or to me.

As a family caregiver, it is important not to ignore the question of your loved one and sexuality. Think about various scenarios and decide how you feel about them and what you think is best for you and your loved one. If they are your spouse, it is up to you whether you want to continue to have a sexual relationship; if not, there are ways to deflect and redirect that energy. Sometimes, what comes out as a desire for sex is actually a desire for touching or affection or connection.
Sometimes, dementia sufferers who are living close to each other in facilities make the reasonable assumption that the man they sit with at dinner every night, or the woman they take walks with is actually their spouse, or that they are in a relationship, even though their spouse may still be alive! Some families have a problem with this, some don't. Personally, I think as long as everyone is safe and happy, who cares if they find comfort with someone else? In any case, it is up to the family to make the decisions, but try to open your mind to the possibilities somewhat since your care receiver's well-being is what really matters, not your own feelings.
Make sure everyone is safe and comfortable and not doing something they don’t want to do. If you are placing them, find out the facility’s policies on sex between residents, what they do with inappropriate sexual behaviors, etc. Sexuality is a natural part of being an adult, and it doesn’t just go away with the onset of dementia. Don’t be embarrassed or uncomfortable, and find a good support group or peer who can discuss options and normalize it for you.

Sexuality and Dementia, by Douglas Wornell: I recommend this as the first book I’ve read directly addressing dementia and sexual behaviors. He covers reasons for sexual impulses in those with dementia, as well as medication issues, and the possible issues with sexuality in facilities. I wish he gave a few more strategies for how to disarm a situation between a family caregiver and loved one, for example, but he does suggest some, such as redirection. A quick, informative read!

Thursday, July 10, 2014

I've never heard of this site but this is a very interesting article on a new test for Alzheimer's. For so long the only way to decide whether someone had Alzheimer's, or other types of dementia, was more guesswork than anything else.

People ask me whether it's really worth it to get an accurate diagnosis, arguing that, in the end, dementia is dementia. In some cases, I agree with them, however, getting a correct diagnosis (or as correct as possible) can help avoid medication problems, since some meds are harmful for certain types of dementia; can help people get services and support aimed at that specific disease; and can help families plan ahead for housing and care.

I know that there are other tests like CatScans and MRI's that help determine a diagnosis, but the only way to know for sure is through an autopsy. It is heartening any time we see some sort of advance in medical science related to dementia - usually Alzheimer's. I know I usually focus on LBD and not Alzheimer's, so I'm hoping that they might tweak this test to help diagnose that, but any win against dementia is a win for all of us.

Sunday, July 6, 2014

The More Support the Better!

When I became Dad’s caregiver, lo these many years ago, I was the first person in my peer group to be a caregiver. I had no friends or acquaintances who were going through something similar, and my family is fairly small so there wasn’t much help there, either. It was just out of the ordinary to have to learn how to be a caregiver at 33 so I didn’t have any community to help me out that were going through the same thing. I found some support in books, although, again, it was hard to find ones written for people my age.

So I muddled along as best I could. I remember at one point investigating the Alzheimer’s Association Washington chapter and going to their support group, but I don’t remember finding it very helpful. I hadn’t even heard of Lewy Body dementia at the time, so wouldn’t have thought to look for that group, although there probably wasn’t one ten years ago.

Now, of course, there are many more support groups for caregivers and people suffering from illness and dementia than there used to be. I am really happy to see this because I think support groups are so important. I’m not even sure how often I would have gone to a support group, had I been able to find an appropriate one, but I think it would have helped somewhat to meet others like me and hear how they were dealing with the problems I was dealing with.

When people ask me now whether a support group really helps, I tell them absolutely! It can help so much just knowing that there are other people out there who have wrestled with the same dilemmas; felt the same crazy emotions where you both hate and love your care receiver at the same time; and struggled with the million and one practical details and problems that come with the job.

Over and over, I have watched new attendants of my groups sag with relief and happiness as they listen to someone else detail an issue or tell a story that they can identify with. Knowing we are not alone and that others understand is such an important element of mental health. I truly believe that getting support from others can lessen depression and isolation in caregivers, while at the same time giving them tools and resources they might not have found anywhere else.

If you don’t attend a support group, I urge you to look for one in your area. If there isn’t one, consider starting your own. You may be surprised how many caregivers show up. Check the websites of the major foundations and caregiver support organizations for help in your area.

Wednesday, July 2, 2014


I thought this was a great post on Caregiver Resources Vermont about communicating with people with dementia. We all know how difficult it can be, not only to understand what our loved ones are trying to communicate to us, but to convey to them what we need or want them to know.

Dad is past being able to communicate verbally at all, unfortunately. The Lewy Body has stolen his words, but it has also stolen the physical capacity of his throat and jaw muscles to produce sounds. His caregivers and I have to rely on his physical and non-verbal cues to know when he is happy, mad, hungry, irritated at being managed, etc. Believe me, he is very good at communicating irritation; he stiffens up and refuses to move, and his jaw locks. (I recognize that jaw-locking from when I was a little girl and he was unhappy about something.)

Dad was never much of a talker, we used to spend a great deal of our time together quietly, out walking, or looking through museums. When he first moved into the Adult Family Home where he lives now, they kept trying to make him talk and interact, which, of course, is a good thing as it keeps our loved ones functioning and involved. I had to tell them, though, that he was always the quiet type and not to worry if he didn't say much.

We still spend our time together quietly, and I try to communicate my presence and my care non-verbally, with touches, and hand massages, and smiles. Regardless of whether your loved one can communicate and comprehend verbally or not, the unspoken will always work - touch and body language are your best tools, and they can convey the best to your loved one that you care.

Caregiver Resources has a specific page per state with resources (obviously!), information, and interesting posts. I urge you to check them out.