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


26 thoughts on “Robe or Clothes

  1. Is there room for shelves where he can see his treasures.
    My husband loves photos of the past that bring him warm memories.
    He is not always in bed but when he is he likes to have his things where he can recognize them and feel safe.
    We ran out of room so I blew up his fav photos and hung them up on the bedroom wall and he loves it.
    Nothing wromg with being in your robe all day. I have spent many days in my flannel jammies just because I was more comfortable and needed to feel the comfort if that makes sense.
    Hope the day goes well for you.


    • We have so many shelves up we are out of room. lol, I am making him a photo album and it has photos of Mom who was his favorite person in the world and then I will blow up one of her and place it near his bed. I think he will like that when he gets home. Great ideas you have!!!!!


  2. Glad you decided to stay in your robe. People go shopping in there pj’s now. You are a remarkable lady. I’m only in my first year of taking care of my husband, working and doing everything else. It’s been hard but listening to you & others I know this is the good times it is going to get harder. Glad I found you. Let’s hang in there together.


    • Hi Janeice. Nice to chat with you on here. The only real advice I can give you is enjoy every day, and smile a lot and savor every memory. Big hugs, I am always here if you need to talk my friend


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  4. terry i know this is so difficult for you and part of the issue is letting go of the control. you are and have been the sole decision maker for so many years that i think it is hard for you to release some of that responsibility to other’s. you know that al is in pain and i am here to tell you when i am in pain though i hate to take medication i sometimes feel i will lose my mind if i don’t. of course i am then sleeping and not up doing what some observer might think i should be doing. the same goes for al. if he is to have relief from pain he is going to be sleeping and not up on some schedule. i cannot imagine just how awful this is for you, i will not presume to know the answer. i only say from a position of love that you may need to let go and let the professionals who have been making these choices for years and know what they need to do, do what is best for al. this is what they specialize in. they may not know al but they know disease and death. they know about pain and how to make that the priority.

    who cares if you answer the door in your robe! you deserve to take it easy on yourself. let other’s do the heavy lifting whenever possible. big hugs to you my friend.


    • I guess after having time to think about things this weekend I always thought when Al is in active dying stage, they can use whatever they wish; he will never really care if he is sleeping or not. But then there is the stage next to dying that he is in. Coming to accept that he may be sleeping and out of it through this stage for some reason really bothers me. I guess I want him to have a better quality of life. I don’t want him missing out on anything or not realizing I am here and that I love him. Sometimes I am so screwed up over losing him


      • my heart aches for you and the road ahead. i wish there was some comfort for you. all i know is there are times when i just need to sleep. yes my quality of life is not what i would like on those days,however, i would not have a good quality of life with so much pain. even being able to make these decisions for myself is never easy. do i sleep and not have pain or do i thrash about in pain just so i don’t miss out?

        these are not easy questions and i am not sure if any of us have the answers. sending love and hugs to you and al.


      • you are right. quality of life, is what it all boils down to. Whether he is here mentally or not is my issue. I just don’t feel like I ever win and I usually feel it will be this way until it is over. One thing after another


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