The Lump in my Throat

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As I have stated before I am weak when it comes to people I love. I am writing this post to help heal my heart so that I will be able to sleep tonight.

When Al has had to go to Hospice house before he has a certain amount of time that he can stay.Hospice_house_lead_w_caption I pretty well know when he is returning.

But this Hospice visit is different. He is there only for medication management.

The Doctor sees Al daily at least once per day. I know that Al has had bouts of pain issues, irritability, tears and sorrow since he has been there.

I know that they have removed the nasty drug he was on and replaced it with a more nasty drug. They have removed that one and started a new one twice now. They have doubled at times and changed at others.

Today he has not had any problems. He has had very little pain. He seems to be holding his own. So I have two issues going on in my head.

1. I always had this invisible line in my head. I knew at some point when Al is in the active dying stage that I didn’t care what they gave him. He wouldn’t care at that point. Life would not mean as much to him, nor his cars or coca cola. But he isn’t in the active dying stage yet. That is the next stage he will go into. So my issue is how does he have quality life now? How does he enjoy anything and how can I keep him so he knows who I am and what is going on? When does that line disappear and we go to comfort all the way at any expense?

2. I was so totally confident that he would be coming home tomorrow. The nurse and I just spoke on the phone. She said in her opinion he is ready to come home but it is  up to the doctor and the doctor has to discharge him. Wow, what a disappointment in my heart.

But do I want him home and then he suddenly has to go back because his pain is not in control? Will he come home being so-called out of it? I must wait, it is the right thing to do, but my heart doesn’t like it. Rhino our cat doesn’t like it.

I know that they took Al off the nasty medication he was on here and put him on a different nasty drug with terrible side effects. Then they took him off of that when that didn’t work and put him on a new one. Then they had to double that dose because that didn’t work. Now today they have tried a brand new one. She said he seems to be better now.

I feel so bad for him. I know that when I am sick I just suffer like the rest of us and pray for the day I am better. For Al, he has suffered for a year now with pain getting worse by the month. How he must feel exhausted and worn out. How his spirit must sometimes feel like giving up, dealing with the aggravating pain and all the side effects of the medications.

A year and a half ago Al still walked. He didn’t need a cane. We didn’t need a wheelchair ramp. We didn’t have wheelchairs or hospital beds. He was able to go to the restroom by himself, feed himself, dress himself. Now this little bit of time later he is totally dependent on me.

He can no longer stand safely. If I do get him up he stands on his heels because his feet are so contracted. 90% of the time he needs to be fed. He wears briefs at all times now. He can’t ride his scooter or push himself in his wheelchair. He chokes at times. His breathing is usually labored at different levels. He has to be bathed and dressed. It is the fastest moving illness I have ever seen in my 23 years of medical experience. I hate MSA. If you look it up online you will see the terrible information that says they don’t know why these patients get it nor do they have a way to stop it.

I just wish I could do something to rid all of this from him. I know, only God knows the reason for all of this. I am only human but I have a very active heart when it comes to feeling emotions.

When she and I hung up I just wanted to sit down here and cry. My eyes welled and a lump in my throat appeared, but I know Al needs to be at some point of comfort before they will release him.

I can’t help it though. I miss him and still hope God allows him to come home tomorrow. I have such empathy for all patients that are terminally ill. I pray that when my time comes I just lay down and go to sleep. If I get an illness I hope it is short-lived.

Medications can help but with their strong side effects when you are dealing with several medications can  sometimes do more damage than the illness but you can’t let him or anyone suffer in great pain either.

Well it helped me, the lump in my throat is still there, but the eyes are still moist. Let’s hope that Al has a nice Christmas, right here at home.

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42 thoughts on “The Lump in my Throat”

  1. Oh Terry…I cannot imagine the decisions you have to make day in and day out for Al. I know you exhibit tremendous strength, and give you credit for what you’re doing. You have to make decisions that many of us hope to never have to grapple with, and you do it with grace, strength, and love, and you give Al dignity in his suffering. You and Al are both in my prayers. I pray that tonight as you sleep you will be blessed with insight and wisdom, and the answers you need will come to you with clarity.

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    • That is the best prayer I could ask for, clarity. It is no picnic when you are forced to make decisions about another living person, but I try to do what is right according to what God leads me to do. Big hugs and thanks for a great comment my friend

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  3. Sending prayers and good vibes for both of you. I pray for wisdom for the knowledge to be able to make the correct decisions for my husbands knowing that the Drs are not always right, but also knowing that they have the authority to do what they want and tell me know.
    Sometimes they are overwhelming to deal with and we deal with the VA so I am lucky that they prefer the vets to be at home and not in the hospital unless it is for surgery.
    I hope that the medication works and that Al can come home and be free of pain for a while.
    Hugs

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    • I would be more concerned if he was in a regular hospital, but the Hospice Hospital hopefully the staff have the same goals, comfort. It is so hard to know exactly what to do at each level of this illness. I imagine you have times like this too

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      • yes I do have times like this when times when I feel so overwhelmed I doubt myself and my ability to care for him.
        I was overwhelmed when I got him an attorney for a DNR and signed that I agreed because it is what he wants.

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  5. Terry, like you, I was terrified at how fast the disease moves. Its INCREDIBLY fast, shockingly fast. My brother had the same experience as Al with the MSA, and I am so sorry you are having to live this, I do know what you mean about where is the fine line? Your heart will tell you, I know your brain constantly worries about it, just listen to what your heart deep inside tells you, you can trust it. Also, usually the doctor will help you with that, will be able to tell you when that time comes. Hugs to you beautiful Terry…

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    • does Al resemble your brother’s illness in the stages? What stage do you think Al is in? I think he is in the stage right before the final one. What are your thoughts? Sometimes I just don’t know where we are

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  7. Terry – My heart hurts for you. I know what you are going through. I wish I could tell you it gets better but, unfortunately it hasn’t happened in my experience. The one thing I do know is that pain management is the most important element and that’s something we cannot handle at home unless we have professional support on a 24 hour basis. So many of the pain medications interact violently with other medications, at least in Tom’s case and I’m not comfortable moving doses of pain medication around without professional guidance. Be gentle with yourself. Al knows how much you love him. It’s so darn hard going around the house and wondering if we are doing the right thing and how can it get any worse. Please know You and Al are in my thoughts and prayers. Sheri

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    • you are exactly right on where I am at. Not knowing for sure if I am doing this or that right. It sometimes does me in thinking about it. It is also the fact that the doctor changes medications with out my knowledge. This scares me. These medications they use on terminally ill patients have brutal side effects. What if something happens? Although I know God is in control, I can’t stop myself from worrying. I wish you and I didn’t have to be involved. For me, family is not involved. I wish at times I was standing on the outside looking in too. God bless you and Tom. I think about your days and know they are like mine. Big hugs my friend

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  10. I hope it helps ease your pain knowing that Al is where he needs to be right now. My thoughts and prayers have been with you over Thanksgiving and will continue to pray for both of you. May God take away the heartache and replace it with the peace of His comfort and strength – {{Hugs}}

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  11. My prayers are for Al to be hone over Christmas. I am sure you will make it a very special time for Him Terry. May the Lord bless you with patience and rest as you wait for him to come home.

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  12. My dear Terry, you have been in my thoughts in prayers even when I am away from WordPress. I pray for you to have strength, courage, and comfort in this time of need. I’ve missed you and your posts so I had to come back for a short visit. God bless you and keep you and Al safe and together this Christmas season!!!!

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    • Hi Cat, so nice to see you. Thank you for keeping Al in your prayers. I really appreciate it. I hope you are well and I hope you are going to have a Merry Christmas

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  13. Terry,
    I Have never posted to your blog before, but just wanted to offer support. My 51 year old sister, Marina, has MSA-C and is going down hill fast now. Every day is a new challenge. The progression you write about sounds very familiar. You are doing the very best you can! Anybody who reads your blog knows how much you love Al and how much you care. I hope he is home with you on Christmas.

    Deanna

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    • thank you so much Deanna for chatting with me tonight. I appreciate your comment. It is hard to care for someone who has MSA and to do it mainly alone is even worse and lonely

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  17. Hopefully all will be better in the morning & for when Al comes back home. Keeping him in my prayers so that he won’t be in such ugly pain. And – keeping you in my prayers too to stay strong.
    {Hugs} to you both

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