I needed to go into work on Monday. I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the location of the meeting and time to prepare for the meeting). To leave by 11, I have to allow three hours preparation time at least. To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety. Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start my day 4 1/2 hours before the time I need to be there.
Because I come on-site only one day a week, I usually set up back-to-back meetings while I’m there. It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice). I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings. The entire time I’m on-site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late. Lynn always needs several “just one thing.” My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door. Once I’m at work, I always have at least one or two, “have you got a minute?” requests. Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store). Therefore, I’m always late and always feel guilty for being late.
Monday it really got to me. I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person. I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides. I felt so guilty for having her cover for me that I cried all the way into work. Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well. They don’t say that to my face; on the contrary, they tell me how amazed they are at what I get done, but I see the looks. I know the tone of voice. I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding. I also know what is usually said about people who work from home–Are they really working all the hours required? Can they be counted on? Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me. I would love to be able to work from the office and escape from being a caregiver/full-time worker every day. However, I know that if I was required to come into the office, I would probably have to find a way to quit. On my salary alone, we could not afford a 24-7 caregiver for him. I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night. Driving would not be safe; physically I could not keep up. Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary tract infection from the trauma of the constant movement. His last UTI landed him in the hospital for three months due to various complications. I don’t want to go there.
So I decided to hire a caregiver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do. I wanted an employee. Someone I could give instructions to and who would do all I asked because he/she was being paid to do so. Someone that was a stranger so he/she could help Lynn with hygiene and toileting issues without embarrassment to either. I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong. His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him. Plus Lynn doesn’t want him to do as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened. I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!
It sounds like you wear many hats, and you shouldn’t feel guilty because you think you’re slacking off. You’re doing the best you can under the circumstances, and it’s too bad Lynn andyour co-workers aren’t more understanding.
Donna it makes me sad sometime when I read your post. I want you to stand up for yourself. I have been seeing a councler and she told me, you have some rights in all this And you know what, when I told Tom how I felt, that getting a caregiver was for me and our marrage he understood. One person can not do it all, it is just impossible and totally unfair if someone you loves thinks you should. Really 10 or 12 hours a week, sometime giving up a little control gives you so much more back.,and both of you win. How can someone you love be happy seeing the person they love burned out?
If the situation was reveresed would Lynn be doing the same for you?
Donna I went thru all that. I understand. The last 15 years I did the same thing you are doing. I did not want to let go of anything I thought was my responsibility. I finally had too. The last three years were the hardest. Every thing had to be done for him. I would cry at night for God to give me pations and strength. He did. God took Juan on Nov. 2012. I miss
him so much. We were married 40 years. He lived with Ms for 32 years. You have to figure out what is best not just for him but also for you. May God be with you. God will answer your prayers.
I completely agree with abbie and robbi. I know that Lynn has MS, but that doesn’t mean he should control your every move. I think you’ve lost your sense of ‘self’ in your desire to be a good caregiver. I know it’s hard – my husband has MS, too.