After reading some great dementia blogs over the last few days, I decided that I would create one myself. I hope it will be encouraging to some who stumble onto it, but mostly what I want to get out of this experience is for me. Yep, I said it. A selfish need. I need to get out the struggles, the ups the downs and the emotions. I hope it helps me deal with it.
I picked the title because thats what it feels like.. A walk in the dark. I just have to keep looking for the cracks...because the cracks and the imperfections, that's what lets the light in.
My mom is 59. Looking back, she started having significant brain function issues about 3 years ago. She was probably having minor issues for years before that. 59. Wow. That's so young. Dementia is supposed to be for "old people" right? Well not always.
I won't lie here. My relationship with my mom has not always been the best. Now that I know the signs and symptoms of early onset dementias, I see that some of those struggles may have been related. I chose to believe that. I chose to believe because it was one of the only ways I could truly let go of past hurt and pain. I needed to do that in order to be a good caregiver and advocate.
In 2008 she quit her job as a PRN nurse, and was in the hospital for a week or so with some stomach issues. She moped around the house for awhile, and we all thought she was depressed. She was unable to care for my youngest daughter anymore, so we had to put her in full time daycare. Shortly after that, I put my oldest daughter in after school care at the same daycare. She went and stayed with her sister for a month or so, and then decided she wanted to come back home, and try to work again. That was January of 2009. 2009 is when it all came to light. During the first half of the year I thought she was just following some of her "old habits" and I had a lot of anger and irritation.
I found out during this time she hadn't paid her car note in nearly three months. We saved it from repossession . Then I found out she hadnt had car insurance in 6 months. We disabled the car so she couldn't drive it.
She got a job right off. LPNs are in demand and all. She worked for two weeks. Why? "she wasnt a good fit" she got another job. Got lost in the traffic circle trying to get there. I had to leave work to go and help her get though it. Odd, I thought. She was "let go" after 3 weeks because she "wasnt a good fit" rinse and repeat two more jobs.
At the fourth, and final job, in July of 2009, her supervisor called me. Talk about a phone conversation you dont want to hear.
her: something is wrong.
me: what?
her: she comes to work the wrong times, she mixes up meds, she doesnt know date/day/time, you should take her to have her checked out. tell them I said "shes a danger to herself and others"
We talked a lot more, but thats all I remember.
So I took her to a local hospital, and they kept her for a week, and ran all sorts of tests. Did I mention she didnt have health insurance? yeah that bites. Catholic Charities stepped in and helped. I love nuns. They are so SWEET. And the one that runs the catholic hospital here, let me tell you she is a force to be reckoned with! So, as I was saying, mom had all sorts of tests. They tested her from one end to the other. They found nothing, or so they told me. I was told she was severely depressed, and the depression caused the dementia.
So, with no health insurance, no job, and no assets for her, we tried our best to help her. I found an income based therapist, I took leave from work to take her to therapy. We got her antidepressant filled. My, it was expensive. After a month, I took her to my GP and had him give her a different (less expensive) antidepressant. She got no better. It was terrible. She moped around, didn't speak to me, slept a lot.
In January, we decided something HAD to be done. But what do you do with no assets? Even though my husband and I have good, stable jobs, we are by no means "well off". So he found the regional mental health organization, and sweet talked them into seeing mom for free. What a blessing. Unfortunately, they are the county facility...so they are busy. We got an appointment with the psychiatrist in February. I explained her history, and what had happened since July. He changed her meds, added a different one, and the agency provided her meds. I applied for medicaid and disablity for her. When the paperwork came back, they wanted more information. However, mom hid it from me. I didn't see it until it was too late. They told me I had to re apply. We decided to get a post office box to prevent that. Before I could, the Deepwater Horizon exploded, and I was reassigned to the coast for nearly two months. During this time, she had a couple more visits with the psychiatrist, where he tweaked medicines, trying to improve the depression. Nothing worked.
I finally had time to get the post office box and reapplied for help in July 2010.
Mom was worsening...and her doctor wanted us to see a psychologist, and have some mental tests done. He decided this was warranted when I told him about her not being able to use the microwave.
She literally did nothing all day. She sat on the couch and watched TV. Didn't fold clothes, didn't wash dishes...she just sat.
We saw the psychologist, and he said she had true dementia, but wanted her to have some tests so we could help her disability case. Listening to her answer the questions was heartbreaking. She couldn't remember how long she'd been married, how long shed been divorced, where she went to high school, if shed ever been to college. She couldn't remember the day, the week or the time.
After the tests were done, I found out that her IQ was 20 points below normal. Her sequencing abilities are gone. She cant count, she cant fathom the time or day. She doesn't remember when she last showered. He said he would be shocked if she wasn't approved for disability.
Honestly, based on her past behavior, I never really truly believed that she had a serious problem until this day. This day marked a change in me. A journey started that day that continues. More about that in a separate post.
She was losing weight. A lot of weight. She didn't remember to eat if I didn't remind her. She didn't get out of bed until we left for work. She's always been good at avoidance and denial, that still shows up in spades. I was so worried, but what could I do? She has no assets, I have no extra funds, I can't quit work, I'm in the middle of the biggest environmental disaster the state has ever seen. We sell her car for the payoff.
I found out that the regional mental health program has a free 5 hour a day program with transportation, that provides lunch. I signed her up. Took her to visit. Its not quite adult "day care" but mentally challenged people go there for interaction and a "job" whether its sweeping the floor or passing out napkins at lunch. She seems to enjoy it. At least shes out of the house about 6 hours a day. She started going to the girls ball games again. Smiled every once in awhile.
She still sits, with a sad/mad look on her face a lot. But not as much. And she interacts with us more. The doctors changed some of her meds, and I think it might be helping. Time will tell. But its a crack...and a crack lets in the light.
2 weeks ago we were finally approved for disability. Thank goodness.
