My Normal as a Caregiver is Not the Normal of Others
Feb 3 2010 in Donna W's Blog by Donna W
(Editor’s Note: Today, we welcome our newest blogger, Donna W., who cares for her mom.)
To escape, to have respite, take a vacation, however you would define the luxury of getting away, it has a much different definition and result for a caregiver.
I have been able to get away at least once a year since I started caring for mom. That isn’t very much, but it has become what is normal for me. For my husband and I to go anywhere more then a few hours involves a great deal of planning and preparation. That task is enough to make me stay here and not go!
But, I manage to pull it all together and we leave. I have lived an isolated life here since caring for mom, getting out sometimes only once a month sometimes not even that. The norm for me would be at least once every two weeks. My “radar” is always tuned into what mom is or isn’t doing, whether she is sitting in the wheel chair, in the front room, or in bed in her room, no matter what time of day or night it is, that is my norm.
Now you would think I would relax and enjoy wherever I was going, whatever I was doing? No. Why? Because I have left all that is normal to me and my daily routine, my normal environment, my normal eat and sleep schedule, not to mention what I sleep on.
The sights and sounds elsewhere are foreign and even unsettling. Getting away takes me out of my normal 24/7 on-call, round-the-clock way of life and put into the normal routine of someone else’s life. It is not comfortable, it should be, but it’s not.
Speaking for myself, I am not comfortable going somewhere else, and I am always anxious to get back to my normal. As much as this home has become my prison and caregiving my jailer, this is also where I feel secure. It is difficult to just sit and do nothing somewhere, to not feed someone, change them, listen to them whine, even missing all the emotions and frustrations that are a part of each day.
Even though there is a desperate need to go away at times and have what others call normal take place for awhile, I can’t really relax and enjoy it because I do not relate to or respond well to others’ normal lives anymore. I don’t know how I will begin again and adapt to what others call normal once mom has left us.
Skye said on February 3, 2010
Welcome, Donna W!
Glad to have you here — and looking forward to hearing more from you!
.-= Skye´s last blog ..Frustrated with medications — again. =-.
Kathy McIntyre said on February 3, 2010
Donna, Thank you for this blog posting. While I have been Program Manager of an Adult Day program that provides respite for family caregivers for some time now, I have never heard this very real viewpoint. My mom had told me that when she got a weekend away, it did not do much good because on the way back she knew what she was getting back to. I would though still advocate for some time here and there of respite. A church friend told me one night after going with a friend to the hospital that she slept the remaining few hour at her house (closer than going home) and she felt more rested than if she had been home all night. I told her it is because her mind and body did not need to be on alert if her father needed her in the middle of the night and she was able to go into a full sleep. I would be interested in knowing what would be helpful to you. What would be a respite for you? What would help you to feel connected with the outside world so that as your caregiving chapter closes you will have established your support network to ease the transition. Contact your area agency on aging or other family caregiver resource that provides respite. Even taking 4 hours a week to take an art class, join a social club, go to church, volunteer at a charity of your choice, or shop with a friend at the mall, whatever can give you that bit of a break and be a support to you long in the future. Thanks for the insight and that’s for your devotion to mom.
Donna Webb said on February 3, 2010
Thank you Skye! I am very happy to be a part of caregiving.com!
Kathy, thank you for your comment. I know what you mom is talking about, I always have that in my thinking too, what I am coming back to. But even in that knowing there is still that combo of dread of coming back/needing to get back to that which is normal to me!
Our once a year time away has always been going to one of our 4 sons homes. I can only find minimal relaxation at any of them. I am used to being oncall, on duty, on the edge and so on and no matter where I go, that is my state of being. The most restful place I go is to our church everyother Sunday and to choir practice.
For me, getting away at all during the week, means usually that my husband has to stay here with mom, and he can only feed her, nothing else anymore. I do have a few people I can call upon if I need to, or pay someone, and that is not usually an option for us right now.
I had started going to the mall and walking once a week, and my cousin came to sit with mom, but our extra car has been down, so that ended till my husband can get it fixed, which could be soon, then I will go walking again.
I am in touch regularly with Senior Services, who are with Aging and Disability here, so I do have great contacts since November.
I appreciate your input!
.-= Donna Webb´s last blog ..Drool…….. =-.
SMSopi said on February 4, 2010
Thank you very much for making me feel like I’m NOT the only one. I rarely get a chance to do the “me time” thing, and yes! As time goes on it does become the “norm” and the comfort zone to just give in and stay home. Even to go grocery shopping becomes a challenge, because I’m trying to hurry up and get back home. It is difficult to try and enjoy your surroundings when you’re away. I find myself calling home often, and this even after I claim I need a break:) Thanks a bunch for being here…. another way to cope! With people who can actually comprehend and not make listen to the “you should” and “you know you need to”…. uuuugh! Step into our blessed world;-)
Donna W said on February 4, 2010
SMSopi, you are SO NOT the only one out there! I have been talking with caregivers online since 2006. I pretty much had no one since I was so isolated and alone here, I had to find others online to talk with and share. It helped me through these several years.
You mentioned grocery shopping, there was one evening I was driving home from getting groceries, and I started to have an anxiety moment and also start to cry, I was away from the house, in the next town, it was dark, and I was driving. I hadn’t been anywhere in sometime, or driven. I have had to deal with fear and anxiety when I would get a chance to get out or drive,sometimes, weeks or a month would go by before I got out.
Things are improving along those lines, and I am feeling more settled and stable now when I get out thank goodness for that!
Even when I do get to go on a trip, I would only call once a day, just to check in and make sure all was going fine. I really didn’t worry about it, mom was left in good hands, but even so, as I wrote about, I was not in my “normal” world when going away and relaxing and enjoying that time away was little to none.
Thank you for stopping by and I hope you will come back!
.-= Donna W´s last blog ..The Long Goodbye =-.
Ellen said on February 5, 2010
Is it wrong that I don’t want people to congratulate me for my “caring” and “service”? That’s not WHO I am… someone’s devoted servant. I’m ME. I don’t want compliments or recognition. I want my life back. I want peace and quiet. I have dreams that don’t involve being saintly.
I was on another forum and read the following advice:
“Naturally we have a responsilbility to our parents when they need us, but we also have a responsibility to ourselves to make sure we can continue to help them.”
I’m sorry, but… I can’t stand reading stuff like that.
I don’t have a responsibility to myself “to make sure I can continue to help others.”
You take care of yourself for one reason only… for YOURSELF. PERIOD.