Yes I’m a caregiver. I used to think my caregiver days were a long way off because I always thought it would be for my Mom or Dad and although they are in their 70s they are both healthy. But this past year I became a caregiver to my husband Bob. He was diagnosed with a very rare form of Cancer (Thymoma) in Aug 2008. He was the most healthy person I knew so it came as a total shock. It has been a long often frustrating journey and I could not have done it without the support of friends, family, colleagues and people I came to know during the process. Bob was in hospital from September 08 until end of January 09 and then started radiation after that. He was in hospital so long because he reacted to everything that was given to him. We now know he has many allergies.
But how do you keep everyone up to date while you’re spending your days at the hospital or at doctors appointments or you’re just so exhausted you can’t think. My total focus was on my husband and the only way we were going to get through this was taking “one day at a time”. Literally that’s all I focused on. What were we doing today and only today. I couldn’t think even two days out because we didn’t know how he would be at the end of today so no need worrying about tomorrow. I had enough to worry about. I could not bring myself to think “what if”.
It was important for me to keep a record of what was happening to my husband. You see he’s not the detail person in our household. I am and I’m an information junkie too. I need to have all the relevant information so I’m less stressed. I asked lots of questions each and every day and I kept a record of all of Bob’s test results and reactions both physical and mental (physical is one thing, the emotional side can be really scary) I had read about people keeping journals but for me I had to use technology in some way. I’m not a paper person so I used the Memo section in my blackberry. (yes I’m one of those “crackberry” addicts) I couldn’t find a suitable technical solution that was easy to input data into when I was away from my computer so this worked for me. If I wasn’t able to get answers to questions from the nurses or doctors right away, I was able to take all the details and get help from a friend who is a nurse. She is a very patient person and she was able to tell me what I needed to ask the next day of the doctors or whether this was quite normal for these types of reactions. If you have someone who has this type of medical background this is one way they can help you during this challenging time, so don’t be afraid to ask. They feel they are helping out and it sure helped keep me sane for all those months.
Some people have a hard time speaking to others about Cancer but I’m a people person so it was important for me to communicate. Keeping the details also helped when it came time to keep people up to date. I was getting phone calls and e-mails and I was floundering trying to keep up. Doug uses this blog, but I couldn’t figure that out quickly and at the time I wanted this to be a “push” to people so they didn’t have to go somewhere to get the information. Many of the people in my network are not that technical so e-mail worked really well for keeping them up to date. What started out as a simple distribution list turned out to have over 150 people on it. (if you use Microsoft Outlook this is really easy to do) So I would take the details from my blackberry every day or so and tell everyone what was going on. I tried to put a bit of humour in each day if I could because my husband has a wickedly dry sense of humour so everyone was keen to see that peek through. Many of you will say yikes, how did you do that every day? No it wasn’t easy some days, but it was my release to sit and write about our experiences for that day. It helped me to be logical about what had happened, what needed to happen tomorrow and with doing just the one e-mail it saved me from answering many others. And some days it was my means to rant about what needed to be improved in our healthcare system. Oh don’t get me wrong I had lots of e-mails but what I said each day was a thank you to all who called or sent notes but I just couldn’t respond to each and every one. I read them all however because they gave me hope and allowed me to cry if I needed to. It’s truly amazing what a release a good cry gives. I had a hard time holding it together if I was speaking on the phone or in person so the technology allowed me to communicate a little easier.
The other tool I used was Facebook. Yes I’m on Facebook. It does have a good side to it despite all the hoopla about privacy. You can share information easily on this social medium so I took a copy of the e-mail details and copied them into a NOTE on Facebook. I’d date the Note “Update on Bob Cockram as of <date>” and this would be published to my friends Facebook Home Pages. Like “you have new mail”. Many of my friends and family had trouble with e-mail at their businesses so Facebook worked really well for them once they got home.
We now have a record of what he went through. When I look back I can see Bob’s progress and his difficult times too. This record was also very useful when we went for his first visit to our family doctor. Once you leave the hospital your family doctor is on the hook for looking after you. You no longer have all of the hospital resources available to you. So to bring him up to speed I made an appointment with him the first week Bob was home. I took all the details and made a summary of what Bob went through, his ups and downs and allergies and ongoing challenges. I made a copy of this for our family doctor and he now has this in Bob’s file. If this office had been totally automated it could have been a word file that would attach to the chart electronically but they are not there yet so it’s in the paper file for now. Our doctor was so pleased to get a summary and it has made our lives easier because he had a starting point and we keep him up to date every 6 weeks with what is new.
Summary of tips
1. keep a daily journal of:
a. test results – all vitals – blood work, blood pressure, etc etc.
b. emotional challenges – good days and bad – what triggered each
c. changes to treatment – doctors orders and the date each changed
d. medications dates started and dosage – you’d be surprised how soon people forget when you have lots of changes going on.
e. Allergies and reactions – sometimes you get a reaction and although it’s not a serious allergy you want to know about reactions
2. Communicate with friends, family, colleagues, neighbours – these folks are worried about you and your loved one and they will ask if they can help. It’s hard to think about how they can help, but if you do an update daily you could put in – heh I need someone to cut my lawn or I’m starving the food at the hospital is awful. Often people will just jump in and do things, like make food for you and leave it at your door. This was the best part for me as my husband is the cook in our family so not having to cook or grocery shop was something special for me.
a. E-mail
b. Facebook
c. Blog
d. Whatever way you feel comfortable
3. Ask and Accept help
a. Food – my neighbours and friends started leaving frozen entries at my door it was great
b. Chores – if a friend asks tell them they can cut your grass or weed your garden or clean your house. You can’t do everything so don’t be shy.
I hope this might give others ideas of how to keep the lines of communication open but not overwhelm you as a caregiver.
Posted by Jenny
