Existing Is Never Quite Enough

Last evening I was having a hard time sleeping. I finally fell asleep around 1am. At 4am, I woke up. I went to the bathroom and laid back down to go to sleep; but sleep didn’t happen.

Instead, I immediately went into a head spin of thoughts. Thoughts that had been building up from so many things these past several months. I was thinking about my teeth that are going to be pulled in one week. I thought about my family here and how I miss seeing them. I thought about how much I still miss my brother, Al.

Thoughts to my kids and grandkids, my best friend back home all came rushing in around me like giant waves from a hurricane. My chest started to feel tight. A warm then hot feeling engulfed me.

My legs felt warm and my feet and hands became instant ice. I got up because I have had experience in this area and went to the bathroom. I soaked a washcloth in very cold water. I placed it on my face and the back of my neck.

I went back to bed and wrestled with my thoughts. I tried the arguing with my body thoughts and my brain thoughts. I was desperate to settle down and rid myself of this panic attack.

Finally to no avail, I sought my Bible. Maybe I should have done this first thing, but I  have always been the type of person who is considered by others a survivor, so God is the last person I go to when I finally realize I can not do it myself.

I sat there in bed squeezing that Bible like I was holding the handles on 250 pound bar bells. I started talking to God. I have no idea what I said because this many hours later I do not remember. It seemed, in no time, I started feeling my body relax. The tightness and the heat cooled down. I was able to go to sleep.

I hate these panic attacks. I have not had one since Al was still here. I know that with no one to talk to face to face, I tend to build up my thoughts and my brain goes off spinning like a kids toy top.

I hate it when I feel out of control. I don’t like it when I seek but find no answers. I do remember thinking  how thankful I was last night that I have a home with heat; that I am not homeless. I remember thanking God that I am able to purchase groceries and pay my bills.

What I don’t like is the darkness at the end of the tunnel. I get so little help from my disability, and I can work very few hours per month in order not to lose my disability, that I see nothing down the road. I worry about what happens when I don’t have the money to buy groceries, or pay the bigger heat bills.

It is so stupid when I am sitting here in the daylight. I know and Ute reminds me, worrying is useless. I still feel the after effects from my panic attack last night. I don’t like it and I need to move past it. Life could be so much worse, and maybe I remember when it was.

I remember being homeless and wondering where my next meal was or where I was going to rest my head at night. I was so dependent on everyone else for my next minute. I never want to go back to that again and I think I feel myself in a position that this could happen.

My parents would be so disappointed in me. They would believe that at sixty years old, I would have my own home, money in the bank, a nice retirement to fall back on. Sometimes I am glad they are not here to see the ways of my life now.

I was hoping that by writing this I would relax even more, but I still feel tight muscles. I just know that God helped me make it through the night and I need to see some tiny light at the end of the tunnel. I need something positive to happen in my life. I need to feel worthy. Existing is never enough to keep moving forward.

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