Frustration

I do miss my freedom to do what I want, when I want. I love Brian and would not want anyone other than me taking care of him on a full time basis. But I do miss being able to go when and where I want and not adhere to someone else’s time table. Brian is always happy to go with me places but at times it can be difficult. Getting both of us ready can take a lot of time. If I am not moving well, it takes even longer. There is no such thing as “spur of the moment” for us. And as I get worse, it will be even harder to take off and go. So I try to go as much as I can now. Brian and I both have to live in the moment, taking advantage of our time today since we don’t know what tomorrow will bring. I have been having a lot of pain in my legs this past week. Sleeping is difficult and each time that I roll over is painful. Days like this, I just want to be gone. But I can’t. Unless someone fills in for me, I am always on duty. If I had a full time job, I would only have to work 8 hours and then I would have time off. And I don’t have the luxury of just being sick myself. I can’t stay in bed on a bad day. Brian doesn’t feel this frustration as I do as he is happy to sit and watch TV. He gets lost easily when shopping with me. It is ok if I am holding his hand, but if I am in a motorized cart, he constantly gets lost. I haven’t figured it out, but I think if he takes his eyes off of me for just a second, he loses his focus. So he is just happy to stay home where he knows where his is and where the bathroom is. That is another problem...using the bathroom when we are out. Most places don’t have family bathrooms where I can be in there with him. If Brian is nervous, he has to use the restroom a lot and most of the time, he needs me there to help. I would have loved to be able to go out to the casino tonight and forget my cares. My friend, Allison called and wanted me to meet her there. She is single and can go whenever she pleases. Don't get me wrong. I don't want to be single. I would never trade my time with Brian. But lately, I have been going on Sat. evening which is not my favorite time to go but I go because I can. Frustration is probably the number one concern with being a caregiver and living with a chronic illness and that is what I am feeling tonight.

In Sickness and in Health

This Saturday, one of my three favorite nieces is getting married. We are so excited as Jenny and Cliff are a perfect match and his family is just wonderful! This brings to mind Brian and my wedding thirty-eight years ago. We were just kids, 19 and 20. The vows we said were the standard, “take this man/woman in sickness and in health....til death do you part. We said our vows in front of everyone and meant them but not really understanding what they meant. We thought ours would be the perfect life and we were invincible. We both were able to grow up individually and together, and we changed along the way. Chronic illness has changed us more. The man I married is no longer that same person. The woman he married is no longer the same person either. If we were going through our illnesses when we were first married, our marriage may not have survived. The first few years (sometimes only months) of a marriage have the bloom of romance and hope. A marriage cannot sustain the romance of newlywed love. Every day life gets in the way. Brian and I were committed to our marriage and that commitment got us through the times we were both too busy building our careers or with the kids to have the time or passion for each other. Luckily those periods were short and we were able to get the passion back in our marriage. For several years Brian worked nights and I worked days. It was work to find time for each other and our love, but we did it. We would often play pranks on each other. Once we had ordered half a corpse made out of foam, etc. to use for our Halloween party. I was at work when it arrived. Before Brian left for work, he put it in our bed sitting up. We didn’t have a lamp that worked off a switch in our bedroom, so I always walked into the bathroom to turn on the light to see in the room. I was shocked when I saw the dummy, thinking someone was in our room. I called Brian at his work and gave him hell. He was laughing so hard I don’t think he heard me. No matter what, we always have shared a sense of humor. Our laughter still gets us through some tough days. Our ability to adjust to changes in each phase of our marriage, our commitment to each other and to our marriage, and our respect for each other have made our marriage strong. That strength has been what we have relied on to support each other in our disease processes and to appreciate the people we have become, rather than mourn the people we once were.

Time Flies

We moved in with Kim and Wayne the first of April. We had been thinking about it for a while and while it was a good decision, it was a traumatic decision for me. Brian and I were worried that since the new expensive pills don’t seem to help much, if something happened to me, Brian would not be able to call anyone for help. Brian and I are best friends with Kim and Wayne, even though we are relatives too. But moving meant putting our things in storage, this time maybe permanently. It meant that we had to admit that we needed help and even harder, accepting that help. It took me awhile to come to terms with making this difficult decision. Brian had no problem with it as we are both as comfortable at Kim and Wayne’s as we are at out own place. Brian has been very relieved and happy since we have moved. Kim cooks us a great dinner each evening and we have pretty well taken over the front room. Brian still watches all his favorite TV shows and I have a wonderful craft area in the bay window with lots of sunlight. It is nice not to have the pressure and the upkeep of our own place and we can concentrate on taking care of each other. Kim and Wayne understand the demands of being a caregiver and about once a week they make a point of being here for Brian so I can get out on my own. I am a night owl, which makes it the easiest time to leave Brian, when he is sleeping. I usually go to Thunder Valley Casino about 11 p.m. and spend my time watching and visiting with other night owls like myself. I do love to gamble, but being on a fixed income, I am limited to what I can play. Money isn’t the issue for me. No amount of money to gamble would satisfy my desire to forget my daily life. It doesn’t matter; just being there is an escape for me. I don’t take my oxygen and only use my crutches on a really bad day and just pretend my life is as normal as yours. I am happy to watch others, ( I love to people watch at Disneyland, too). Others in my situation may use alcohol to numb their feelings and quiet their thoughts but I have never been a drinker. Waking up the next day with a hangover doesn’t appeal to me. When I come home, I know that nothing has changed and I am tired from a long night. Not having to think, feel and deal with living with the stress and emotions of both of us having a chronic illness for those few precious hours helps me to keep an upbeat attitude around Brian,. It helps with my sense of humor and I am ready (albeit, reluctantly), to face a new day. I would like to be the best caregiver that Brian could possibly have which is difficult when dealing with my own issues. Thank heavens for the help that Wendy, Kevin, Kim and Wayne and even the grandkids give to us. I know I am not a super duper caregiver and not without my faults. Poor Brian is stuck with me 95% of the time. We have discussed having him go to a day center for Alzheimer’s patients for a change to his daily life, but at this time he would rather be with me. It is hard to watch Brian as his disease progresses but we try to keep his spirits up. This is a disease where it is harder on the people around him than on Brian himself. Blissfully, he isn’t aware of a lot of the things we see and his needs and wants are taken care of. His daily life is as enjoyable as we can make it for him.