Not a Good Day For Al

Tomorrow is Thanksgiving and today, this very minute I am thankful for being here at home and not in a hospital with a heart attack or stroke. Today has not been a fun day. Al woke up with pains.

Pains everywhere from his feet to his neck. He struggled with breathing. Even when the Hospice nurse came today Al showed signs of breathing difficulties and pain. I don’t understand. I just don’t understand how they brush it off.

As his sister it was hard not to get overly stressed. He went through periods of burning all over he said to heavy sweating, to not eating. The helper was here today and she not only helped Al she helped keep me calm.

I got dizzy so much. My sugars dropped. I ate to bring the numbers back up and started to feel better than Al would start into a whole episode of pain all over. His head hangs so far down on his chest with all his skin hanging there it makes it so difficult to hear and understand him. His legs are contracting, his feet are contracting. His one arm won’t work anymore. It is just hard for me to watch.

This afternoon he started sounding like he was aspirating some. It looked like his mouth was drooping and he was drooling real bad. Breathing was hard.  I finally called Hospice back and asked for a nurse to come. The charge nurse said alright but a few minutes later she called me back.

She stated the nurse that had been here three hours ago said when she left Al was nice and calm, that maybe I just wanted him to go to the Hospice house. I exploded over the phone.

That conversation of the Hospice house had been brought up with the nurse earlier today that was here and I made it perfectly clear that I wanted Al home for Thanksgiving. I was mad that this nurse of Al’s would imply this after our conversation.

I started yelling at the charge nurse. I don’t know if Al will be discharged from this Hospice or not for my yelling at her but stress, worry and crazy words from her made me tell her about MSA and how it can change hour to hour.

She said she would document that I called and the symptoms I had told her. Al was given higher doses of pain medications and he finally fell asleep.

I keep asking these professionals, what is happening? what is happening? I don’t think anyone knows. I think they suspect that I will just go with the flow. Maybe a part of them is right, he has this disease that is incurable and there is no way to help any longer except pain medications, but does that mean I understand?

I am scared when Al gets like this. I can’t help it. Burning all over, pain levels that are higher than a six out of ten. Not eating, tears, crimson face, sounding like he’s aspirating?

The helper is going to come tomorrow to get Al up and see how he is. I told her she then needs to go home and be with her own family for the holiday. I am tired, and am thankful that I got so much of the food preparation done for tomorrow.

I am thankful for being here and Al being here with me, but I am scared, I can’t help it. I feel like I am walking in a dark room feeling for familiar things but there aren’t any, and when I don’t have Hospice nurses to count on, I feel totally alone and rose

48 thoughts on “Not a Good Day For Al

  1. I’m sorry Terry. You are not alone, we are here and it’s not Thanksgiving for some of us, so we can easily speak to you (in a manner of … speaking) if you need it



  2. I know what you are going through.My heart truly goes out to you.No one can really understand unless they have been down this nasty road!!!!!.My husband has been fighting this for 8 years.He is also home and a week ago Hospice stated coming in.I know the tears come and you try so darn hard to be strong.When things are rough and I just dont know how i can make it through another day I sit by myself and talk to my best buddy ( GOD ) and i ask that he please take my troubles and help keep me strong.Let go and let GOD.If ever you want to talk please contact me.Try to have a good day tomorrow.Thinking of you both.God Bless you and your brother.


    • I hate it that you know what I am going through. I wish no one had MSA. I ask God to help me so much he is probably tired of listening to me. The new helper is a blessing but you are right , there is nothing anyone can really do. Hospice has been here with Al almost six months now. Hospice is good but in some ways it is sad because methods I use to use no longer work in Hospice ways. Have a great Thanksgiving. I am thankful tonight that Al will be with me tomorrow


  3. Terry dear, he’ll be better; they can be very unconscionably unkind, bullying too, I’ve dealt with them 34 yrs so, don’t feel guilty for getting upset. This isn’t easy! THAT’S a fact! He’ll be better and God with his angels will attend to you both. Fear not, doubt not, everything will be calmed down. Keep praying for Heavenly Father’s interventions, I am praying too. xoxo


    • Thank you my dear friend. I hope God knows how much Al is really suffering in pain. The turmoil and frustration wants me to see Al in comfort even if it means God taking him


    • Thank you Eric. I hope God really knows Al is suffering. I just want him to not suffer anymore. His pain is always on the high end. He is tired and I feel so bad for him, but you are right, God is everything in due time


  4. Seriously praying, Terry. What a friend of mine calls “carpet praying,” on my face before God begging Him to give both of you some relief. I’m so sorry you’re both having to go through this.


    • I wish God would relieve Al from his pain. It is my hope from now on. Al has in my opinion suffered enough and it is almost unbearable for me to watch. I thank God for sending a friend to me. You and prayers are wonderful. Have a Happy Thanksgiving and God bless. Thank you so much


  5. It’s so tough to deal with the holidays as a caregiver. I think it is healthy that you can express your feelings so clearly through your blog. Please keep us updated on Al’s condition as time allows. We are all thinking of you and sending along positive thoughts.


  6. Terry I am thinking of you and Al, remember each day as it comes. I can understand you are scared and worried and may be the hospice don’t really know what is happening, as each person is different. You need to accept that though too. Good the lady helper is calming you as well, she is a gem. Do have a good thanksgiving and the main thing is Al is with you, most important. I am praying for you and Al and wish for Al to be at least not in pain! this is the worst disease I have heard of. May God give you strength and understanding. Much love and big comforting hugs from me!


  7. I really hope that your writings and then the comments you get are welcoming and lifting to your traumas. Knowing that so many would and are there for you when needed. 😉 strength in numbers…


      • yes for most of the day, both kids worked but my daughter was home in time for dinner. I have been thinking of you all day – were you able to visit with Al today?


      • No he is over an hour a way, but I call daily. Maybe you don’t know it yet, that he was admitted to the Hospice House hospital Thanksgiving Eve during the night for out of control pain


  8. Terry I hope you have a good Thanksgiving with all that is going on with Al. I pray that the good Lord gives you both comfort and strength. It is so difficult to be a caregiver but 90% of the time you are so strong that the 10% when you are ‘normal’ instead of being super sister/caregiver, you have the right to fall apart, be stressed and worried. Al is being guided through the last stages of his transition it sounds like, so I will pray that God makes his journey one without pain and only warm sweet comfort, please know we are all here for you and we love you. God bless and keep you.


  9. i so hate that you and al are going through this. how wonderful that you have help now. while the hospice nurses may seem like they don’t understand your fear they do. they cannot let themselves become emotionally involved though. they need to remain compassionate but not overly invested. how could they otherwise continue to do the work they do? remember they know what is going on and if you think of it so do you. you know that al is dying. you know this disease and the pain it brings. you have done your homework well. it is acceptance that is difficult. i worry that you think acceptance is a bad thing when it is just the opposite.

    i hope today goes well and you enjoy your family and al has a good day. i will be thinking of you and sending big warm hugs.


  10. I’m glad that you’re happy Al is with you for Thanksgiving… but Terry I think sometime you may have to say…he would be better to be in a hospital where his every need or time of distress can be handled by nurses etc who have the equipment and means to do so… To see someone you love as much as you do Al in terrible stress would be hard for anyone… I think if he was not visibly in trouble it wouldn’t be so hard to even realize that perhaps his time here is somewhat lessened….. but to see him like you are is different.

    I remember seeing my brother who we took into the hospital as he was having trouble breathing…. and then finding out as he did that day that he had cancer throughout …(he had a ct earlier in the week and only found out the results when we took him in) He deteriorated that very day and the next where his organs were shutting down and he was in extreme pain and distress …and watching him tore my heart out… He could only be helped by strong pain meds…he passed two days later… The only reason I mention that is that I felt so helpless watching him in distress as you are with Al… and maybe it is time to reevaluate whether or not he can remain at home …. Of course it’s up to you to decide what is best for Al and for you…. spoken only with love and concern…. Diane


    • I had him in a nursing home once. Unless I can’t do this I will keep him at home. I just can’t do it again. I know what you are saying though, I understand, and I love you for caring. Have a great Thanksgiving


  11. I am sorry you and he are going through this is. It is so hard to watch your loved ones health getting worse and worse.
    We have been blessed with husbands care givers.
    I wish I had more words but I just want to say i understand and am sending prayers.


  12. Pingback: The Lump in my Throat | terry1954

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