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.