What do I Want to do With the Rest of my Life


What do I Want to do With the Rest of my Life

Remember back when family and friends asked you what you wanted to be when you grew up? It seems years ago doesn’t it? But as I near that ripe old age of 60 in April, I am asking myself what do I want to do with the rest of my life.

Is it over at 60? No, of course not; unless I let it happen. I am on a swinging door it seems of late. As Al makes his way closer to heaven’s door, I find myself…

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You Do What You Have To Do


You Do What You Have To Do

I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.

I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be…

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What do I Want to do With the Rest of my Life


Remember back when family and friends asked you what you wanted to be when you grew up? It seems years ago doesn’t it? But as I near that ripe old age of 60 in April, I am asking myself what do I want to do with the rest of my life.

Is it over at 60? No, of course not; unless I let it happen. I am on a swinging door it seems of late. As Al makes his way closer to heaven’s door, I find myself questioning myself. What happens next?

When the moment arrives and Hospice makes those final words of Al’s passing, how will I be? Will I shiver as the Medical Supply Company rings my doorbell, requesting the loaned bed and accessories? Will my legs quiver, will I feel faint?

How will I react when I walk into Al’s room and he isn’t there? When the room looks void, although I will see all of his personal belongings. Will I fall to the floor and finally let those tears fall? Will I run for my bedroom and bury my head under the covers and not come out for hours?

I realize this too shall pass. This chapter will close with a soft stoke of a brush. My broken heart will begin to heal without my realizing it. Will I get up in the morning and walk my routine to Al’s room and say good morning to an empty room?

At this moment it is so scary. My sibling, my family will all be in heaven and I will remain glued to soil, waiting my turn to leave. But what about in between, what will I do? I can’t stay here locked inside my home. I just know I won’t be able to deal with it.

I have visions of taking my camera and heading to the park. I see myself taking photos of people holding hands, children laughing, birds flying, planes soaring. But what will I do next with them?

Others have gone down this road before me. There have been losses of spouses, siblings, parents, friendships, so I can do it too right? Just one foot in front of the other. A short walk to a door that I can turn the knob to open.

So why am I so scared? I guess it is because I have lost myself along the path. I forget who I was before I took on the task of being a caregiver, but I have another chance to be me. I can sit down on my couch one day and look around and ask myself, what do I want to do with the rest of my life.

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You Do What You Have To Do


I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.

I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be considered an easy job, meaning there is no lifting nor transfers from bed to chairs.

This job is very mentally draining and for me very emotional. The changes occur frequently. Sometimes Al’s MSA will change hour to hour. Staff that works in this house have to be or learn to be flexible or it will definitely become a burdensome task.

Also, I can remember when I was a caregiver for other patients, not family. We go, we do our job and then we go home to  our own private life. I never gave it too much thought how much time is still left in the day for the primary caregivers.

Now that I am that primary caregiver, it is imperative for my mental and physical health that caregivers be here at all times unless bad snow storms hit. I am responsible 16 hours per day and when a caregiver doesn’t show, I am suddenly thrown into a 24 hour day.

I love my brother, but I need a break. This is why I hired two caregivers.  It saddened me yesterday when I was forced to let one of the caregivers go. It just seemed every week there was a day called off.

My friend came here to be with me for emotional support, friendship but I found it disturbing that she was jumping in and doing caregiver work when one did not show up for work. I felt so bad for  having to make this decision, but I have to sometimes put me above even Al.

Also yesterday it saddened me deeply to learn that my friend was going home. It is easy to be selfish and want her near me, but alas, she has her own life to live and I must let her live it.

Now I have one caregiver that splits her responsibilities between her job and here with Al. She is picking up some of the other caregiver’s hours, but I have learned today that I will still carry that sole responsibility of caring for Al each weekend and a couple of days a week.

There are no easy answers. I went for six months without any help and I so appreciate any help I can have for Al and me now. I pray daily that God will take Al home and I will gain the rest that I so desperately need.

I am drained, tired, exhausted, sad, frustrated and yet somehow I get through each day and night. Al will always remain the most important person in this home. I have to do what is best for him even if it means I suffer along the way. He is the one laying in the bed, not me.

The house is quiet. The caregiver is here. I look over at the recliner and I do not see my friend knitting the baby blanket. I don’t hear her sweet voice or see her beautiful smile. I don’t see her eating her popsicle. I miss her so much, but I have learned so much in the past seven years. The most important thing I have learned is life moves on whether we want it to or not.

Life has never nor will be a bowl of cherries. Laughter can not always be made to happen. But I still stride to look for the small things each day to help me carry through. I lean heavily on my friends here at WordPress, through numerous comments.

I lean maybe too much on the MSA groups through Facebook. Maybe I do lean on my caregiver and all of my internet friends, but if I don’t, what will happen to me? I do what I have to do, this is what I have learned through my adult life. God will carry me through, because someone out there in this world needs me.Terry, 2014

All I Can Do is Love Him and Cry Inside


All I Can Do is Love Him and Cry Inside

How do you deal with something that is out of your hands? How do you make decisions when there are no options to choose? Which way do you turn when you see no doors open?

For a few days now Al has had his illness seeping out onto his face. We have dealt already with the illness seeping in his feet and his catheter area, but now no one knows how to fix the problem.

Al continues to fight high…

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All I Can Do is Love Him and Cry Inside


How do you deal with something that is out of your hands? How do you make decisions when there are no options to choose? Which way do you turn when you see no doors open?

For a few days now Al has had his illness seeping out onto his face. We have dealt already with the illness seeping in his feet and his catheter area, but now no one knows how to fix the problem.

Al continues to fight high temperatures that continue to rise and without the help of Tylenol prescription strength, liquid, he would already had a seizure and maybe have been brain-dead or worse.

Now we are dealing with this stupid illness that has come out of his ear and trying to escape through the other ear. Hospice has been here a few times to try to conquer this issue, but nothing they prescribe helps.

No one can get inside the ear and bring MSA out. His ear is swollen, red and bleeding. Worse yet, it is the ear that is on the side of his head that is locked into a non-moving position.  I have never felt so darn helpless as I do now, doing everything in my power and yet doing nothing  at all that helps.

I need a super human power. I need a miracle. I need Al to be released from this terrible pain. I see no sense to this madness. I can not find any explanation as to why Al is not being taken home. I am exhausted, Al is restless and in pain. The illness is having its way with him and all I can do, is love him and inside cry my heart out.

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