When my visiting son witnessed a stomp-off fit by my H over a minor issue, he commented, "It's like living with an 11 yr old, isn't it?" This led to my telling him all my anguish, fears, frustration, and he suggested that if I didn't have anyone to talk to, then I start a journal. For the first few years, I wrote surreptitiously and hid my notebook. I researched and read and then I found Joan's site about a year ago. I read her blog from the beginning, and recognized so much of what we were going through. After reading many of the articles, I started reading the Message Board. You have helped me so much. I keep my journal on my computer now with no worry that it will be looked for or read. I fuss and complain and feel sorry for myself and wonder what is next, but I also use it to be concrete with the non-H side of my life. We are at the "not obvious to the casual viewer" and "this has substantially changed the marital relationship" stage. The repetition in my journal confirms how slowly we are moving. I'm posting this in case keeping a journal might help someone else.
I have not kept a journal for years--but I've thought about trying to print off some of my posts about DH during the time I've been on this website, and maybe keeping them in a nice journal-type book. It's like this website has been my journal. But I'm not sure…some of my posts have been so strong--very unusual for me to vent like that--and really, very few people "get it" except the folks on this site. So maybe I don't really want those thoughts and emotions displayed anywhere else. Carol, I remember so well the "not obvious to the casual viewer" stage. If one more person said he seemed fine to them, I was literally going to lock myself in the bathroom and scream. And also the stage where I realized it wasn't really a marriage relationship anymore, but a caregiver/patient relationship. Still a marriage, of course, but not really.
Carol, I think it's great that you are disciplined enough to keep a journal and it's helped you to put your thoughts, fears, hopes down on paper. I have tried several times to keep a journal but have not been able to keep it up after a few days or a week at most. I have no idea why I am unable to keep a journal, I love to write and read but for some strange reason I just cannot put my thoughts about this journey and what's happening in my life down on paper with any regularity.
I think it would be a useful way to document both his decline and how our lives change from year to year.
I did not keep a journal, but when we were at the “not obvious to the casual viewer” stage, I wrote a 2-column list of “What Husband CAN Do” and “What Husband CANNOT Do.” The entries were things like, “make coffee,” “take a shower,” "put clothes in dryer." I pulled it out every 5 or 6 months and added new entries, but I did not look at it constantly or dwell on it. I stopped updating it when I decided it was time to admit him to LTC.
This was simply a factual record. It contained no expressions of feelings or philosophical observations. But it was psychologically helpful because it gave me a reference point that was grounded in reality and it prevented me from fooling myself by wishful thinking.
Strangely, not one of my husband’s doctors EVER asked me for this kind of information.
Lots of people keep journals and get a lot out of it. I, on the other hand, resisted writing down what was going on in our life; the changes in our relationship, my feelings about it, his behaviors. I felt that to write down what was happening would just tear my heart out. I functioned better when I could just deal with what was happening but not dwell on it. In other words: DENIAL! I guess being introspective is not my strong suit. I don't deny or defend it. It worked for me when he was home.
Now, however, I see the wisdom in journaliing but have become very undisciplined. All I can manage is seeing him most days and maybe tidying up the house once in a (great) while. Maybe my new year's resolution for 2015 will include journal writing.
Fiona, I don’t think that not wanting to keep a journal is a sign of denial. Different things work for different people. For me, keeping a journal of the traditional kind would be deadly, since I have two destructive traits -- cynicism and self-pity. So writing about my troubles would only encourage me to wallow in my misery.
What I have found effective in times of emotional hardship is to keep what I think of as an “anti-journal.” Instead of writing about my pain and sorrow, I focus on something I find pleasing. In my case, it is nature. Every day I write a precise description of one or more things I observe in the outdoors, e.g., the color of the bark on trees, the feel of the breeze, the depth and length of shadows, the abundance of berries on a tree, the activities of birds, the texture of the snow, the way the air feels. I do not include my opinions or feelings - I just describe these things as precisely as I can, but without using technical terms.
This discipline forces me to concentrate very hard on things I find beautiful or pleasing. And it gives me a break from thinking about the things that are troubling me. I have done this on and off for at least 25 years but for some reason, I did not do it while I was taking care of my husband at home. Now that he is in LTC, I think I will start to do it again.
Carol, Thank you for bringing up this interesting topic!
Myrtle, your comments about the beauties of nature resonates with me. For most of my life I have done photography. I even tried, unsuccessfully, to start a photography business when I retired (I found I loved taking pictures, but not selling them). When DW got to the point I needed to spend most of my time taking care of her, photography took a distant back seat. Now that she is in LTC I find that I am back to taking pictures. I even just bought a new camera.
I have kept a journal for 6 years now. It is on my personal computer. I go back and look at previous entries to see exactly how much has changed. It is funny, some of the things have changed and some have stayed the same. I don't know if I want anyone to read it. I really put my feelings down. I have thought about letting the people my. DH is doing research for have it. But I would wait until he is gone.
I agree LFL that not writing it down is not denial. We all deal in different ways. In the 90s I journaled while going through counseling. I would give it to my counselor to read in which she would write comments or questions in the margin for me to think about. It is also where I felt God spoke to me - between the lines.
I started a 'blog' shortly after I found this place but did not keep it up. I only write in it every few months which turns out to be long because I am recap what has gone on since the last writing. I, like LFL, do not want to write about this every day cause I find it too draining. I like to take each day and for the most part try not to think past the current day except when appointments, bills, etc. are needed to be done.
Myrtle, I really like your idea of a kind of gratitude journal. I have started what I call a "Grace Gifts" journal - what I think are touches of God's grace in everyday things, but I haven't really kept up with it :( I also started a sometimes journal of what I feel & experience through the awfulness of this time, but haven't kept up regularly with that either. I'm a pretty undisciplined person in many areas, not really motivated much of the time. Like others have mentioned, sometimes I just don't want to think about it if I can escape it for a while, at least in my mind. Sometimes I feel rather zombie-like, just scrolling through mindless things on the computer - I love Pinterest, Tumblr & even Facebook, until that becomes a little boring.
Maybe I WILL put this blog in my Grace Gifts journal!
I've never kept a daily journal. It always seemed that each day is so much the same as the next that there is nothing very interesting to write about. My dear Helen kept one for the first year of our marriage and now that she's gone, I so much enjoy reading what she wrote sixty-eight years ago about the happiest days of our lives.
Actually, I never wrote anything until I bravely started communicating on this site. Since I'm living all alone now, I find that I really enjoy writing, and I'm having a good time writing this. It's like talking to someone. I mostly write about my Helen and the things we did together during our sixty-six years and I've written so much, I think I'm turning into a writing maniac.
I started a little website just so I'd have a place to put my stuff where I'd have access to it and family members could read and give me hell for some of it. I've never held anything back. I've nothing to loose and it's so much fun. I blame some of you on this site for giving me the big head by telling me I write well.
Maybe it's because of my age, 93, and having not much else to do, but it's certainly been great therapy for me. I can't imagine what my life would be like right now if I had not gone through the sad dementia experience and stumbled upon this site and become such a great writer. ...................As always.......Thank you all for being my friend........GeorgieBoy
I'm into my 8th year of keeping a journal. I started it when first observing signs of what I thought were Alzheimer's symptoms, and I'd bring summaries of my journal entries to the neurologist, our family doctor, etc. Clare was first diagnosed with and treated for stress, then anxiety, and then depression, but I kept making journal entries and tried to convince doctors that what I was observing were clear signs of Alzheimer's and not stress/anxiety/depression. Eventually a geriatric psychiatrist asked to read all of my journal entry summaries and he used some of that information to form a judgment for more testing that led to Clare's diagnosis of Alzheimer's. At one point I was making almost daily entries, than several entries a week, then several entries a month, which is where I am now. I also have been sending copies of my journals to our married children, at their request, to keep them apprised of the current status. Writing in any form helps me to clarify my thinking, so I expect to continue to make entries several times a month.