Updating MSA Patient, My Brother


Al continues to remain but the changes that he is being forced to deal with now are miles from being pretty.

He is now unable to swallow as well as he was last week. Fluids have been decreased in order for him to not die from choking to death. No more home-made pureed foods, only infant baby foods. No more coke, which is just terrible as that has always been Al’s favorite drink.

He has blisters on his feet. He had a goose size blister on his head which drained this morning. At any time he remains to develop new blisters. The illness is battling against me and his body.

It is determined to come outside of his skin and so gloves and any protection we have available is used at all times. Things are ugly, just plain ugly.

But you know me, I have to find something good about each day. The one good thing is that Rhino jumped up on Al’s bed one time, so I hurried and took his picture. Then I found ice on the trees, and I don’t remember what else, but here are the photos. Oh, I remember my friend who is staying with me made me a pink scarf to go with my new vintage pink purse.

I also want to thank all who have helped with Al’s funding for his tombstone.

snowMerhinosquirreltreetree 2

Al

Nasty MSA


It’s really been a rough few days. I have gotten into it with Hospice on more than one occasion. I have told them I need more help from them, as far as their nursing part goes.

I am still struggling with being so tired but my blood pressure is down quite a bit. The medication I now take makes me sleepy and I feel guilt by falling asleep when my caregiver is here along with my girlfriend.

Everyone inside this house is treating me like royalty. It doesn’t feel familiar. It feels strange, but I don’t fight it anymore. I accept with blushed cheeks and will never forget what others are doing for me.

Al’s illness is now in his bloodstream. It has taken over every part of his body and now has entered the blood.  It has nowhere to go so it is seeping out of his eyes and mouth. He has a big blister on his feet  that is filled with the illness. I pray constantly that God takes him home.

Both Al and I have had what we feel are enough. I pray that if God wants me to learn something else from his sickness, that he opens my eyes so that I may see it. It is breaking my heart, watching Al stuck inside of this shell.

I can see almost exactly in what area Al’s heart is failing. Yesterday his hands were not swollen. Today, once again they are. His leg will swell and then later go back to normal.  His skin is getting weak from being in bed so long.

We are having huge issues with his catheter plugging constantly from his kidneys shutting down. I and the caregivers are pretty busy trying to keep Al comfortable. Now the new blister is hurting  him but I dare not pop it or touch it.

I have him protected in case it does cause a mess. I just pray, wish and hope this ends very soon. If I could think of one thing that is keeping Al from going to heaven, I would move mountains to make it happen, but I can think of nothing.

I want to let you know that I have worked very hard at making and paying for all arrangements for Al. I hope that I am prepared in every area I could think of. The tombstone was the final goal, and now thanks to you, my friends, that goal is getting closer to being met.

I had the wrong link so here is the correct link if you would care to help.

peace

 

 

 

https://www.giveforward.com/fundraiser/4gx3/burial-expense-tombstone?utm_source=facebook&utm_medium=graph&utm_campaign=vanity_page&fb_action_ids=10201927411201540&fb_action_types=give-forward%3Ahug&fb_source=other_multiline&action_object_map=%5B543348005772375%5D&action_type_map=%5B%22give-forward%3Ahug%22%5D&action_ref_map=%5B%5D