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…

View On WordPress

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

Robe or Clothes

Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressure seems to be alright and my sugars are normal and yet I feel like crap. I imagine part of it is the weather and my nose and sinuses do not care for the heat on in the house.

The other part is probably just me being drained, tired and exhausted. I ran yesterday, Thanksgiving on four hours of sleep. I crashed at 9pm and slept until 8am this morning. I felt fine when I got up and then about an hour later started feeling like crap again.

I called the Hospice house last night to check on Al. The nurse said he had not had a good day, but at this time in the evening he was starting to calm down. I learned they had changed his one pain medication to another.

I had thrown such a terrible fit about them trying to drug him up so bad they discontinued that drug and changed it to another. But the issue is bigger than that. You have a patient who is in pain 24/7. His body is constantly contracting and shrinking.

Muscles are hurting from non-use and then you have these terrible medications that can actually make a body worse. Hyper or slowed to the point of barely moving.

For me I find myself having to make decisions for another soul. Although his life is truly in God’s hands I play a big part in it too. The quality of life is the teeter totter. Balancing between comfort and someone you begin to not recognize in order to get that comfort.

This to me is stress at it’s best, which like I said before, is probably playing a big role in why I don’t feel good. Just because Al isn’t here, doesn’t mean my own body is in a stage of miracle healing. The side effects of being a caregiver can take time to heal to a point of what it was before.

I called Hospice again this morning to check on Al. They stated they can not get him up to go to the bathroom because he is too weak. This is what I am talking about with the medications.

Is it the MSA progressing to the point that he can’t stand or is it the side effects of the new drug. I hate it when they express they are giving him a new drug, which in truth is just another name for the same drug.

Same family of medications, but more severe side effects. I researched it to death this morning and it is dangerous. So where does the teeter become less tottering? I don’t know.

The helper is coming over today for a while, while  Al isn’t here. We are going to try to arrange his  room so a wheelchair and things he needs in there are easily obtained. I hope we can figure everything out.

Al throws such a fit and I also realize how much his vintage cars and coca cola mean to him. I also realize that while he is in bed more and more he enjoys looking at his treasures. But then you have the issue of needing more space as he is taken care of more in his bed.

The wheelchair needs to be able to have enough space for when he needs it and the caregivers need space also, so we shall see what we can come up with for the benefit of Al and me.

With Thanksgiving being over I have decided to be lazy today. I didn’t go to any stampede black Friday sales last night or this morning. I am still in my robe. I am expecting a delivery for supplies for Al. I really don’t give a hoot if I answer the door to him dressed this way or not. Who cares? If he wants to take mental note that a caregiver answered the door in a robe, so be it. Let him try being a caregiver.

The sun is shining and I am trying to get my mood and smiles to shine also. It is  hard though, I am just plain tired. Al will probably be home Monday, so I will tend to relax, clean his room, and maybe squeeze some time in Christmas shopping, who knows,,,,maybe I will just stay in my robe until Monday.robe



A blog is a place to ask for support, tell wonderful news and share photographs. It is also a firm ground to vent, and today this is what I am going to do for my first post.


The house is very quiet right now but my head is doing its fair share of stirring up a small funnel cloud. Al did go to Day Program today. He started waking up at 4am wanting to get up. Each time I had to tell him it is not time.


He watched TV and I laid in bed under the warm covers listening to the baby monitor and trying to close just one eye. I was still tired. At 9am, the shower gal had still not called. I went in to check on Al and he was crying.


Fear of no shower and evidently stressing over not getting to go to D.P. was bothering him. I used the phone and called the office. A message was waiting for me. It seems that although the shower gal called, our phone never rang. She was on her way though.


I explained to Al that she was coming but by then he was too much into the stress part and he wasn’t truly listening to me. It seems that this shower gal is coming later and later. She gives Al a very quick shower and he is still damp when he gets on the bus.


We all know what this can do to a healthy person, let alone an ill patient, especially as it gets colder outside. She finally arrived and was surprised that Al was getting a shower instead of a bed bath.


I explained to her that she should just always assume he will get a shower and when she calls to let us know she is on her way, I can tell her then if he is not going to D.P. She was cool with that.


She took Al to the bathroom. Now in the bathroom there is everything ready for her. I have already shaved Al and brushed his teeth. Towels, wash cloths, and his gait belt is all waiting and ready.


I came out to my computer and turned it on. I don’t remember what I was thinking I wanted to tell her but I popped my head in the bathroom to say something and my mouth dropped immediately.


Al was taking his three steps, and actually doing rather well considering the past four days, but, she was not holding on to him at all. I immediately with probably a stressed voice told her to hang on to him.


She said ok. I told her, ” I don’t ever want you to have Al in any standing position without hanging on to him. He could fall so quickly but if you are holding on to him at least you can let him slide down your leg and he would have less than a hard fall.” I had always learned this in my own 23 years of experience and training.


She just looked at me and said, ” I hear what you are saying, but he is a big guy. I will never hold on to him so tight that if he falls he will hurt me.”


I think I was speechless and then the sister part of me kicked in and I asked, ” Do you know anything about M.S.A.”? She rattled off the long name for it and explained she doesn’t get involved with the diagnosis, she just gives showers.


I took a deep breath so I could speak in a nice manner and I explained about the wires in his brain not working. I told her that although he is standing alone at this moment, the very next second he can buckle and go down. I also told her that I never wanted to see her not hanging on to him again and to use the gait belt for better control.


She came back with she wasn’t hurting her back over him. I left the bathroom fuming and confused. Under normal conditions I would have reported her butt to the office, but on the other hand, the staff seems to have a hard time getting employees to come up this far, so I feel trapped in some ways.


I want Al to have his shower, and yet I didn’t like her comment. I didn’t like that she wasn’t trained on M.S.A. and knew nothing about it. Maybe I am just too protective but Al has fallen even in my care and the bathroom is tiled, not carpet. Well, crap, I just don’t want him to fall period, and for her to say she was more concerned about her than him, just made me swallow wrong.


I am going to the grocery store and stocking up because now I never know if he will go to D.P. the next normal scheduled time or not. I want to enjoy my time out today. I haven’t left the house since last Thursday, so I had to write about my thoughts so I can at least enjoy the trip to the grocery store. Now that sounded pretty bad didn’t it. Terry is going to get all excited about grocery shopping. LOL

English: A funnel cloud just east of Salina, K...

I Am Grouchy

Today is not one of my better days. Although I have been trying to stay upbeat it is getting harder as the day goes by. Al has been home today. He is weepy as most days. He seems a little confused.

He didn’t know which way to turn to get into his bed. He even called me mom. Generally, I make some sort of joke about what he says but today I am more irritated with everything. I think I need a break.

I don’t feel the best. Having some pains here and there. Discouraged because I had to turn the furnace on. I just absolutely hate winter and everything about it here where I live. Dreary, cold, ugly, way too much snow, windy. This is the day today.

I got Al into bed for his nap. I actually had been in his room fifteen minutes and asked him if he needed anything and he said no. Just moments later he calls me back in, letting me know he was ready to lay down.

Routines, schedules, I just want to scream. What is with the schedule of he can only nap at 3pm?

Of course I know what it is but days like this I don’t like it. He used to always take his nap at 3, not a minute before or after. Supper has to be ready at 5. He wants in bed by midnight.

I finally came out here and ran to U-tube where I find solace away from my problems. I went to a man who I like to listen to. Maybe you will enjoy him also.

So many tell me I am amazing, a great sister. See? I can be grouchy too.