Quick! Where is the Straight Jacket?

I didn’t want to do anything today. I didn’t sleep well last night. Al was a wake through the night, not wanting anything really. Seeming a little confused. I am feeling guilt this morning also.

I got a call from the Hospice nurse stating Christy the regular nurse Al sees will not be here today. That the nurse last night who was here will be seeing him instead. Oh dear, what have I done, is what I was thinking.

I remember being so  upset yesterday that the Day Program has said they tried to call Christy but she never called back. I knew that there had been two occasions where I had tried to get a return call from her but nothing.

When the other nurse appeared last night I blurted it out that it wasn’t right for the only link to Christy was through her phone and the fact she doesn’t return the calls is very upsetting to me.

I just hate getting anyone in trouble period. Of course it could be that Christy was just off or ill or something. I have a bad habit of thinking the worst at times.

I looked around the house and thought the hell with it. It will still be  here later today. I am still in my house coat after taking care of Al this morning. I did get him up and he went to the kitchen table. His voice was so soft I could barely hear what he was saying. I just have having to say huh, what did you say?

He ate a smaller breakfast but he did eat. He once again said he is going to die very soon. I don’t know what it is about me that is wired wrong but I am like the person who has to know how everything works and how it fits together.

I sat down with him while he ate and asked him what makes him think he is dying. He said he just knows inside. He said he knows he is getting weaker. He said his nails are getting grayer.

I had always been concerned about his gray nails too but Hospice says it is no big deal and not to worry about it. Of course my come back in my mind is then why aren’t mine gray.

I have found myself trying to give explanations to anything. Example, he ate breakfast, even though it was small, he ate. He isn’t dying. He just doesn’t feel well. Or he is alive and well this morning, so last night, what was that all about? What did the nurse mean when she said he is declining?

I don’t see any real major changes. Yes, he is definitely weaker in every way, but that doesn’t mean he is dying. I am making myself so ill that I am constantly running to the ladies room from my nerves being infrared.

The fact is I don’t want Al to die, and on the other hand I want him to go home so he can be pain-free. I don’t know when he will leave. Al can’t possibly know when he is leaving. He just feels like it won’t be long. Maybe he is right, maybe his is wrong. Maybe he is just having a rotten day.

No one seems to know why he blacked out yesterday. No one seems to know any direct answers, and I think this is what is wrecking my emotions. Watching, listening, checking on him often.

I  hear his labored breathing. I see his hands turning white but his nails remain gray. I see him eating. I see him declining in some ways. I see me  a ball of mixed emotions. Why can’t I just settle down and accept the truth. Only God knows. I guess I don’t want any surprises?

Wow, why would I even think such a stupid thing. Hospice is here. They are only here for one reason. This is no surprise.

I better quit before one of you comes here and puts me a way for going nuts.  All I know is I love him, I see what I see. I hear what I hear and God only knows the rest. Well I have to get dressed now and straighten up the house. The phone rang and the Hospice Social Worker called and is coming over. Now what………….


49 thoughts on “Quick! Where is the Straight Jacket?

  1. You are both in God’s hands Terry, and you know the outcome, whatever happens in the next few days or hours, he will be in heaven and you will go on because that is what you know that you want, for now! Your own time will come and you would not want to be held back and you wouldn’t not want you children to be in pain. Just put it in His hands and love Al!


  2. Prayers for strength and peace for you. You cannot keep driving yourself crazy this way. There are no explanations for many of the things that happen to those of us with MSA. Take a deep breath. Turn around and walk into a wall face first, That may knock some of the frustrations away or at least knock you out so you can rest your brain.


    • I actually laughed at the picture of me walking head on into a wall on purpose. That is a good one. You made me laugh for the first time today. Thank you for this.


  3. My uncle is declining, or maintaining. Well, perspective makes all of the difference, as well as one minute compared to another. I live with my aunt and uncle now. I’ve been here three weeks. He needs care, but not constant. Still, there are minutes, sometimes hours out of any given day we wonder how long will he be with us? If you have one of those nifty oxygen level gadgets that you place on the finger, maybe you will see (and know yourself) what his oxygen level is at any given time. He probably blacked out because his oxygen level was too low. Perhaps any movement would cause that since it would be taxing his heart/ lungs. {{ hugs}} my dear friend. Angels comfort you. Know that they are there.


    • Thank you Soul. I don’t have one of those Ox finger levels but the nurses uses it on him most times. His levels range from 94 to 97 most times. I hope you are doing well


  4. my heart breaks for you Terry – My mom passed away December 15 of 2012 and I relive all the emotions I had all over again everytime I read one of your blogs. The waiting and the anxiety of not knowing just breaks my heart for you!! I remember standing in the hallway afraid to walk in and her be gone 😦 Then feeling so guilty I wanted her to stay with me, even if that meant staying in her exact condition, I didnt care I wanted to be sooo greedy and just keep her here!! I miss her so much everyday now that she is gone and have yet to see it get easier. My regret, I just didnt curl up with her in bed those last two weeks and monopolize every second. It seems so unrealistic but I wished I had talked to her more and worried about her leaving less!! 😦 Im praying for you!! Hugs from ME!!


    • U speak my thoughts exactly. Every single morning I hesitate before walking into his room if I have not heard his tremors through the baby monitor. I want him to stay here and I want him pain free all at the same time. I will always regret not spending enough time with him, cleaning the house, cooking or what ever in the end, but then again who else is going to do the essentials that need to be done in a home if not me? Hugs to you my friend. We sound so much alike. My daddy, my pride and joy died six years ago this December and it is just as tough as it was that many years ago. The only thing that has changed is life moves forward whether we want it to or not. I get involved so much with life and caring for Al, that I don’t think about Dad as much, but when I do, the tears are right there


  5. It is difficult when you are a “control freak” as I am as well, to not drive yourself crazy. Things are always the worst that is the way I think too, but I can tell you that God is the only one that knows but I don’t see Him letting Al or you suffer much longer. As I said before strength comes from Him just ask and He will be there for you. love and prayers dear one.


  6. This must be so very hard for you! Perhaps the only thing to do is treasure every moment, put quality into what you have left with him. Perhaps it will still be a good while. Even so, you’ll feel better having relaxed and spent time with him rather than only fussing and trying to fix things for him.

    I know I’m speaking out of turn, but I believe each of us has a path to walk, the path is harder for some because maybe they need to learn a more advanced lesson (because their souls are already more advanced so need a bigger challenge) than others of us. I have a friend who has a deeply autistic child; the child and the whole family are on a path, each on a slightly different one. I feel we are all on a learning curve before we can become angels or whatever higher beings, and the learning curve is this life we’re in. It always astounds me the amount of personal strength I see in people on a really harsh path, like you and Al. You shine like beacons in the dark. When you feel it’s darkest for you, that is when your light is shining the brightest for others.


  7. Hugs Terry… My heart goes out to you and Al! I know it is very hard on both of you… (question! are you taking anything like a happy pill?) They do help! Just to take the edge off!
    Hang in there hun! God puts us thru stuff for a reason they say… payers for you both…


    • You copy and paste the link at the top of the page, then copy it on the page you want it to be. Do you know how to copy and paste? You right click on the link, then you go down to copy and click on that. When you get to the space you want it, right click again and go down to paste. that is all there is to it!!! hugs


  8. Pingback: Dedicated to My Friends on Facebook and WordPress | terry1954

  9. dearest terry, i am so sad at the stress you going through. what i have heard from others is we do know when the time is coming. my mother-in-law was happy and reading her bible just before she took her last breath. looking for clues that the time is not here is normal. i can only imagine how heart broken you must be. sending love and warm hugs to you my friend.


  10. It’s amazing that you haven’t had at least a partial meltdown before now. This situation is such a roller coaster of emotions, and you’ve held out better than a lot of people would have. It’s probably normal to imagine that Al is just sick instead of dying. It’s hard to let oneself fully dive into that water. The whole time my brother was in a coma I just KNEW he would come out of it eventually, even when the doctors, nurses, and even my parents were saying it just wasn’t going to happen. When my brother took his last breath I didn’t want the nurse to remove his oxygen mask in case he took another breath and might need it. Letting go of someone physically is so hard. Being torn between wanting Al to be in heaven enjoying himself but yet knowing you’ll miss him and not wanting to let him go seems pretty sane to me.


  11. I am so glad I can go back and read about Al and your love for him… I think my husband being older than me will go before me .. With all the real emotions that come with that.. Probably a long time for us yet .. You have help so many by sharing So glad you are writing your book Heart to Heart Robyn


Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.