Life is Not Cut and Dried


Today, there were issues with Al’s catheter. I asked the nurse to come out and help me, which she did. After taking his vitals the only change she saw in him is his pulse, or heart beat.

For Al, he has had a heart attack along with Angina. He also has tremors on the inside of his chest wall lining. His heart is probably the weakest of all his organs.

Al doesn’t give the regular cues that doctors and nurses look for in a dying patient. MSA constantly keeps people confused and feeling like they are water skiing or big waves. Yesterday, the nurse said Al was worse. Today she said it could be hours, days or maybe weeks.

All the nurses believe Al is worse. Even I believe he is declining by the day. He has lost so much weight I can see very clearly his hip bones, shoulder bones, his jaw lines. Just about any bone visible to his eye.

But when the nurses come and they check his vitals, they go mainly on what those are for that day. Instead of saying he is an hour to hour, she now said days. I let out a sigh, then instantly felt guilt.

I don’t want my brother to go at all, if, he was in a healthy state. But the daily task of taking care of a person who may follow with his eyes, your body walk through his room or a once in a while whisper is very tiring.

You can pick up Al’s arms and they are like a bowl of jello. His legs are heavier than all get out because they are totally limp. When the body becomes limp it actually feels heavier than ever.

Turning him from side to side is a huge issue and takes a great deal of strength.  He takes liquids through a syringe and is down to about a half a syringe per drink. Food and drink are held at bay and not given unless Al request it. The reason being everything that goes into  his mouth goes directly to his lungs. Aspiration is the worst way to die, and believe me not feeding him as usual makes me feel like a monster. Keeping food and water from him makes me feel terrible.

But I have seen someone aspirate to death and it is an ugly sight to see and for this reason alone, I will obey the nurse for Al’s sake.

When the nurse said maybe days, maybe hours, I just fell apart. I suddenly heard myself telling my girlfriend to go home. Oh I don’t really want her to go home, but I realize she has a husband, dog and grandchildren, plus the comfort of her own bed at night. She has her crafts and friends.

How could I keep her constantly here when there is no real ending in sight. She fought it emotionally for a while but I convinced her to take the break from here. I love her enough to send her home so she can take that break a way from the hell here in this house.

Al’s doctors believe 100% that Al’s heart will just quit. If I have some sort of notice I will make a phone call to my friend, and she will return without hesitation. This is the gift of friendship. I know that nightly she will call. I know she will always be here. We have an understanding of each other. Over 30 years of friendship has built a rock of foundation between the two of us.

So the house is quiet today since she left. The caregiver didn’t show up today so it is Al and me. I am still taking my medication. I am cleaning here at home. I have a window open for the first time to air out the house since it is almost 40 degrees outside. I have enjoyed watching the icicles fall from other homes, and seeing the snow melt from house roofs. It is a sure hint that this winter too shall  pass and once again flowers will pop and bloom and green grass shall show itself once again.

New life will once again breathe and hope will be strengthened in our hearts. For today, I am strong. Today, I have hope for a new life for Al and myself. Tonight or tomorrow may bring a different story as MSA shows it ugly self in so many ways.

Life is not cut and dried. I have learned this through my own experiences and watching this illness take over Al, but for now, I am calm.

flower blooming

36 thoughts on “Life is Not Cut and Dried

  1. hugs my friend…only God knows the time of Als entering the gates…not the nurses or doctors. Hopefully for his sake it won’t be long, all you can do is keep him as comfortable as you can, knowing all you do is just that all you or anyone else can do.
    I am glad you are able to open windows and do a little cleaning it always helps to get a little exercise no matter how we do it, and you will have a nice clean house when done. Don’t forget to rest though you need rest more than anything. Love and prayers

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  2. Still praying for both of you. You are so strong. You’re doing everything you can. I admire you for your faith, your serenity, your hope…

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  3. I’m praying for peace for you and for Al. My mom is now going through a similar situation with her husband and although he’s not as advanced as Al, I know how exhausting it is for my mom…and for you. I pray for God to give you strength to get through this final chapter. Hugs!

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    • Thanks dear friend. I hate it that your mom is going through anything that is tasking. I know we all have to do what we have to do but still, exhaustion is awful for the mind and body. Hugs

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    • I think if you were here you would make me laugh all my stress a way!!!!!! But you are right, there is something about peace passes understanding. Thanks Sheila!! hugs

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  4. This post has given me thoughts as to why he is hanging on, but it is so difficult to explain, and I have been wrong with everything else I have said, so I may be wrong again. Okay, so not maybe.

    I know you are doing the best you can for him because you are a fantastic sister to him

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    • I have no idea why he is holding on. I have tried everything I can. Said everything I can think of. Now we are down to the nitty gritty of holding food and drink to little so he won’t aspirate to death. Any ideas you have I trust you to tell me

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  5. “New life will once again breathe and hope will be strengthened in our hearts”, I am taking that with me. You are a super-woman Terry, keep being strong. I am sure your strength inspires a number of others who are fighting MSA around the globe. My prayers are still with you and Al.

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  6. You are so right an life is not cut and dried, and is not one some fits all. It follows a path of its own and some times all we can do is follow.
    I am happy you are having a good day and hugs your way.

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  7. I keep & hold you & Al in my prayers every day.
    So nice that Ma’ Nature gave us a bit of sunshine yesterday & today. I probably should have opened a window or two even if just for a few minutes.
    {Hugs} to you
    {Hugs} to Al

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