The End

Dealing with my mom’s death was the hardest thing I have ever done. I moved home for a good month after my mom died to help my dad get stuff in order. Personally, I just wanted to be left alone with my immediate family and my husband. But that is the way I dealt with it and that is how I wanted to grieve—in private. The rest of my family was different and preferred to be around family and friends.

I think about my mom every day. She was intelligent, successful, caring and a great role model. I could talk to her about anything, and I felt she could do the same. I don’t know how she balanced every thing she did. I kept all of her emails she sent me and take them out from time to time to reread them. I am thankful I have these to remember her and to have reminders about how much she loved me.

In May 2008, my husband and I welcomed our first child, a boy, who is my parents’ first grandchild. Two months before my mom died she sent me an email about having babies and attached a great story, which I have on my refrigerator. I wanted more than anything to have my mom around after my son was born so I could ask her questions and hear stories about my brother and me when we were little. That is one of the most difficult things to deal with - I don’t know about her experiences. Luckily, my dad is around to fill in some of the gaps, and he is excited to have his first grandchild.

Overall, I feel blessed to have such a great family and close friends. I am glad I was able to spend that last month with my mom, and in a way, to say goodbye. We were also lucky to have such a wonderful doctor, church and hospice care. I think we were blessed in that respect and hope my mom is proudly looking down on us.

~TM

How has caring for someone with prion disease affected your life? Your relationships? Your job or retirement plans?

I basically took a leave of absence from my job to care for my mom. I lived in Los Angeles and she lived in Pensacola, Florida, so I moved back home for the summer. Luckily, I have an amazing job where I was able to do that. My husband was extremely supportive and was there most of the time. I don’t know what I would have done without him. My brother, who lived in Alabama, also came home to help. In the latter stages of my mom’s illness, I went to a counselor at an LA medical facility who gave me some pills to help me sleep. I was having nightmares about my mom, which continued for about a year after her death.

What problems have you encountered in getting help? Have you been able to get information, healthcare and other services when you needed them?

I think the most difficult issue is finding reliable sources of information. The credibility of the Internet is questionable, but finding reputable sources (as limited as they were) about the disease helped. However, since this is a rare disease and different people have different progressions, there is not enough research about the disease.

Tell us about other aspects of your life. For example: What you do for a living or are you a student or retired? Are you married? Do you have children? Where do you live? What is your highest level of education? What are your hobbies or interests?

I am a college professor at Cal Poly Pomona University. I am married and have a son, Ryder, born May 2008. I live in Los Angeles and I have a PhD in communication from the University of Miami, which I received four months before my mom passed away. In my free time (which there is rarely any), I like to travel, hike, read and go to shows.

What has been helpful to you in coping with the difficulties of caring for someone with CJD?

We were fortunate to have close family and friends who helped us take care of mom and who visited her in the hospital. Also, talking to people who knew about the disease was helpful.

What practical tips regarding day to day management of patients or caregivers can you give?

Find a support system who can help you with day-to-day activities. Be patient. If you start to get frustrated and upset, walk away for a few minutes or have someone take over. I had to do this a couple of times and when I returned to my mom, she wouldn’t even remember so of course I couldn’t be upset. Also, managing my mom’s visitors and making sure my mom wasn’t overly stressed was difficult. Definitely one of the hardest things to do was to tell family and friends, “no,” but it was for my mom.

How has UCSF CJD team been helpful?

Just talking with someone who has knowledge of the disease was the most helpful aspect.

Is there anything else that you would like to say?

One of the difficult things in this process was separating fact from fiction. While most people want to help and be supportive, others give you misinformation or unwanted advice. I actually had one person who owned a local health food store, who we didn’t even know, call my husband and tell him that doctors don’t know anything and we should give my mom some natural remedies. A Realtor actually gave this person my husband’s cell phone number. She is very lucky she called my husband, because if she called me, I think I would have given her a few choice words.

Also, while most people were extremely supportive and kind, some were not happy if we told them they couldn’t visit my mom at that specific time in hospice care (we would only let a certain number of people in at a time). In hindsight, I wish we only allowed close family and friends in to her room to visit. I don’t think my mom would have wanted people to see her in a coma. Some people would also say upsetting things, but they did so unintentionally. More than one person told me how hard of a time I would have when I had children because my mom wouldn’t be around. I know they meant well, but this was a really difficult thing to hear. But I guess that just comes with any disease.