That One Smile From Al


The days just keep getting worse. Al surprised us with another big mess when he awoke. I guess I shouldn’t be shocked any longer, this is now three days in a row. You know what I am talking about. The brown package, and no, it isn’t delivered in the mail.

Al is getting a little mean. He told the shower girl and caregiver to get out of his room. He told everyone who visited with him that they just come and leave; that no one stays. He moaned a lot in pain. He didn’t sleep today much.

I have made many comments about Al’s medicines. I feel like I should spend a few minutes talking about them. I am sure it is no secret that Al is on the stronger medications. But with Al, he has brain damage, so medications do not do the job they are intended to do. Instead any of those feel-good meds make him wired and wide-awake.

He can cuss and scream, stay awake, be hateful. Many types of medications have been tried with success until you start giving higher doses. Al seems to do fine with a new prescription. Then it happens; he becomes immune quickly and the physicians raise the dose. This is when everything goes hay-wire and we are back at the blackboard again.

The nurses are frustrated and no one seems to know what to do next. Meanwhile I have this sick guy in pain. There has to be a medication somewhere in the middle. If you have ideas or want to talk to me about any of this topic, you can find me at tellmenolies2004@yahoo.com    I am also on Facebook. https://www.facebook.com/terry.shepherd1

He was finally given an irrigation with a numbing agent in it for his tissue tear. I hope this works as he has complained of a stinging feeling. He says he hurts all over. It just really rips my heart apart and I find myself looking to the heavens and asking, ” Why, why wait?”

This evening it is quiet. The nurse has gone home. The caregiver has left. Her two bosses were here today and they are gone, and now Al is sleeping. For how long I do not know, but I am grateful. Asleep means feeling no pain.

He cries to me, ” How do I get to heaven? I can’t get there. I feel like I am in jail. Why is God not answering me?” He states many times he wants to die. I can’t say that I blame him. If I felt like he did and was in a bed 24/7 I may want to die also.  We fight sores on his body from him laying there so much.

He eats a few bites at meals. He takes very little water, and yet he remains to suffer. Hospice mentioned that maybe one reason Al didn’t sleep today is because there were too many people here.

Maybe she has a point, I am not sure. I will change things around the next time there are more than one person here. One visitor at a time. If the Hospice nurse is here, then there will be her and me or the caregiver and no one else.

Bathing will have to go back to two bathing. If there is something to this; I will do what I can to help make things calmer for him. I am sure visitors will understand. Al tries to talk but gets frustrated. This causes tremors to speed-up and then leads to tears and anger.

Maybe what Al  needs now is peace. He hates any light. He says he can’t see very well anymore. Maybe his peace will be more darkness with the light of the TV on and one visitor per room for a few minutes.

I have decided to test this starting tonight. I will take good care of him and then tell him I love him. I will wait to see if he ask for anything and then I will leave the room. I never wanted Al to feel like I didn’t care. I am sure that is the way others feel also.

Guilt for myself can be a heavy load. Satisfying my own needs of making Al feel this way or that may actually be doing more harm than good. So I will try to limit the amount of time. I know that I fed him some yogurt for supper. I gave him his medications and a syringe full of water. I told him I loved him. I waited for him to say anything, then I left the room. I just got up and checked on him and he is sleeping.

Heaven from what I have heard is a peaceful setting and maybe I and anyone who visits can help him to get this wonderful feeling right here in his own room. The Pastor dropped by earlier and made a comment to Al that brought that one smile to Al’s face. He said, ” Al, one of these days you won’t be looking at all your cars in their boxes. You will be driving them.” Al brought a tear to his eye but there was that one smile.

heaven

I Am Just Plain Pooped Tonight


A very special person who was in Al’s life came to visit him early this evening. Although he didn’t say much I knew by his eyes he liked having her here. I was happy for him and I heavily thanked her for stopping by.

Rhino, the cat has been acting so weird today. This morning he was pacing the hall way. He would go to Al’s room then to the hall and back to Al’s room. He would act like he was going to sit down and then back in Al’s room he would go. I got up and went in to see where he was at but couldn’t see him. This was around 7 this morning so with the time change it was dark in there somewhat.

I stepped farther into the room to get a better look at Al and suddenly Rhino appeared at the corner of Al’s bed. He stared at me for a second and then hissed at me. I quickly looked at Al to make sure he was breathing and then backed out of the room. Rhino didn’t follow me like he would normally do.

Then when my friend woke up she went in to see Al and Rhino was guarding the door way. She stepped back out and the cat stared her down as if saying get back! For the rest of the day Rhino has been sleeping, so I don’t know what that was all about.

Rhino 2Al has this wonderful nurse who had come out last night to change Al’s catheter. I really felt bad for her. To have to attempt this project not knowing what was on the inside of that tubing, had to make her a little nervous, or it would have me. She was so gentle with Al and talked to him during the process.

She did her best to do a fantastic job and I give her big kudos for what she did. But when I saw all the blood this morning on his legs I got worried. It was when Hospice made me think this was such a normal thing for what had happened and didn’t make me feel like it was worthy of checking him out that I blew my stack.

That wonderful nurse came out today on her day off and took care of Al. It brought huge comfort to me that she cared. She is a fairly new nurse and I hope that as time goes on she always keeps that compassion she has now. Thank-you R. for always being here for Al and me no matter what.

Al is still seeping blood tonight and there is blood in the catheter bag. I am keeping a good eye on it, you can count on this. If it starts to speed up or gets worse in any way, I will be aggressive with my voice again or do what I have to do to make him as comfortable as possible. To others I may seem like the biggest pain in the butt, but I am Al’s advocate, his voice. He was and is hurting and I am here to make sure he doesn’t suffer anymore than he has to. One day my voice will quiet, and the world will know that Al is finally in heaven, but for now, just call me big mouth.

The care giver is gone and my friend has gone home. The house is very quiet right now as Al is finally asleep and not moaning nor crying. I may not get a Hospice visit tomorrow or a care giver as the weather forecast for midnight until tomorrow is a weather storm warning with four to nine inches. I am so sick of the snow I could just hide under my bed covers until I see that first Robin of the Spring.robin

The weather man said that Saturday we may see more snow but no predictions of snow amounts yet. When is it going to stop? Tomorrow evening we will once again be in the single digits over night; a big four degrees. It has been a long, long winter with 109 inches of snow and it isn’t done yet. Along with the maddening changes of Al and his illness I really need to see a flower blooming.flower blooming

I’m So Pissed I’m Steaming


Last night I smelled something wrong when I went in to check on Al. It smelled highly of urine. I checked the catheter bag and it was empty. With the help of my friend being here we started investigating Al’s body.

His shirt was soaked in urine. I called  Hospice and informed them of the change. They sent a nurse out with the intention of changing the catheter and accessories.  I want to add that I have asked a few times if Hospice could change his catheter more than the normal once a month and they have refused. With the illness attaching itself to the internal tubing. I think it should be changed every two weeks, but it is against policy.When she arrived she did what she needed to do but ran into a snag.

The catheter was stuck inside of Al. Now, I want to back up to a couple of days prior. I had reported to the nurse twice that Al has stated he has to pee but he can’t. I have also said to Hospice that Al has a liquid coming out of the tubing going into his penis that looks exactly like KY Jelly.

Nothing was replied back nor checked into. So I have now come back to last night. The nurse tried and tried to pull the tubing out of Al but the tubing was stuck. She contacted another nurse who said she didn’t know how to  help.

She called another nurse who did come out. Together they pulled the tubing out. There was some bleeding but the nurses repeatedly told me there may be a little bit of bleeding but it would stop by morning.

This morning when Al was checked there was blood running down between the legs. There were blood clots at the top of the tubing. He is still bleeding and complaining of burning. The catheter bag itself, is filled with blood about 250cc.

I immediately called Hospice and asked for a visit. The regular nurse was not in. Another nurse got on the phone and said this was perfectly normal. According to the two nurses that came out last night made comments that in all their years of nursing they had never seen this happen.

The illness of M.S.A. had attached itself to the inner tubing, and so when they tried to remove it through the small opening of Al’s penis it wouldn’t budge without being pulled. So now as it stands, this isn’t the normal day Hospice would come out.

The  nurse said to me on the phone today that if she had to come out it would not be until later this afternoon. Then she said this is so normal that Al could bleed all day today and tomorrow.

I asked her repeatedly where the entrance of the tubing inserted to. I knew  the answer but I wanted to hear hers. She kept saying the tissue. I said what tissue? Where is it going when it is inserted?

She then stated, ” I will have another nurse call you.” I said, ” I asked you where the tubing went into.” ” Into tissue.” In the end she said, ” Well do you need a nurse later this afternoon or maybe you could just keep an eye on it and let us know if you see anything odd.”

End of conversation. No nurse coming. Al bleeding. I am so steaming pissed off I could blow steam out my nose. I can’t even change  Hospice at this point as Al is too close to death for any change.

purple candlesHere is a clip from a web page My Health that I am pasting here to let you know I am not just over reacting.

As stated above, trauma is an ever-present facet of catheterization. However, there are rare cases when the catheter has caused some sort of physical damage either because it was too thick or if the balloon was overinflated for an extended period of time. In either cases, contacting your physician as early as possible will allow you to get the condition checked out and fixed.

With regards to an infection, physician attention is critical. The urinary bladder is technically supposed to be a sterile area. If an infection were to occur within it, you will become sick and will need to be put on a course of antibiotics to be treated. The longer a urinary infection remains untreated, the more difficult it will be to remove it. The presence of blood in your catheter bag in tandem with a urinary tract infection will open up a pathway for the bacteria to cross into your bloodstream, so you should contact your doctor immediately when you detect heavy amount of blood in your catheter bag.

The Iron Skillet Feeling


This morning has been terrible. I woke up to Al being awake. He had, had a BM first off and was complaining about this. I cleaned him up and wondered why he is having these so often, when he never used to even go by himself without medication.

He was crabby, very crabby. He was complaining about his arm, his butt and his ear. I checked his ear and it was bleeding. Just yesterday it was completely healed. Now it was crusty and white illness was draining from inside his ear.

I doctored it the best way I know how. He had a temperature of 104.2. I immediately gave him his medication. He was stuttering and I couldn’t hear a word he was trying to say without playing the guessing game, which I did.

When I watched his lips I realized they were not moving. I asked him to  open his mouth for me and it looked like a giant spider web. The infection was inside his mouth and it was gluing his lips together.

Once again I swabbed his mouth to allow his lips to move. His eyes were draining. He had a sore on  his buttocks. His one arm was slightly covered by a throw blanket and he was complaining about this. I uncovered it. He wanted the fan on so I turned it on low.

He wanted breakfast so I gave him some pudding and he ate two bites and wanted no more. I think Al is so miserable that he doesn’t have any choice but to complain. He asked why there is no nurse here.

I told him it wasn’t her day to come. He asked where staff was and I said we don’t have much staff here any longer and that he would have to learn to be content with me more often.

He asked why no one wanted to come help me and I had nothing to say. I wanted to pipe up with because you and I have leprosy, but I kept my big mouth shut. I got a call from the caregiver saying the two bosses want to come over today and shadow or train watching us take care of Al.

Now here I got a little snotty to myself I guess. For one, these two bosses are never going to come here and work. They are office people and have their own responsibilities. For another reason, these are the two that sprang the unannounced visit the other day.

I told staff I don’t give a hoot. It is a bad morning. I feel like I am going to have a panic attack. Al is in a crabby mood. Tell them I don’t care if they come, and if they don’t come, it’s alright too.

A thought entered my mine at that very moment. I can’t do this anymore. I am going to be forced to place Al in a nursing home. He is miserable. Then I started fighting, trying to stay strong.

I had been practically begging Hospice to let me give Al a special cream for extreme pain. They have continued to tell me no. Letting me know that most care givers don’t apply it right. I told her I had used it with other patients and was very familiar with it. She ignored my plea.

I decided to call  Hospice after leaving Al’s room. There was not one nurse available. I ended up being forwarded to the administrator nurse where I got a voice recording. She did call back and pretty much said, ” I will give his primary nurse a call. She is off today, but she is familiar with his case. I just think his illness is too rare and I can’t help you.”

Wow, I thought, the head hauncho doesn’t even know how to handle Al’s MSA, this makes me feel real comfy. This regular nurse informed me yesterday when she was here that she wasn’t going to be coming tomorrow either; that a replacement would be sent. This seems to be a regular thing week after week. She is rarely here on Fridays. I feel like it has something to do with the fact I bitched about wanting a Hospice visit three times a week instead of two.

She called me about twenty minutes later and insisted that I give him this one medication she had brought. I fought it for two reasons. One, it makes him wired and he doesn’t sleep. Two, I am the only care giver today minus two hours and I didn’t want to have to fight this whole, ugly mess all day.

I asked her to please get me the cream. She said no. She said Al was too wet and too oily. I said, ” What? He hasn’t sweated for a couple of months or so.” She then said, ” His skin is too oily, so the answer is no.” She said his Bm’s are from his illness, just part of the process. She said there is nothing more to be done about his ear.

I felt defeated, slammed to the floor, helpless with nowhere to turn. Here I have a brother who is miserable as all get out. A high fever I am fighting. His bed sores, his body locking in place. His ear bleeding. His mouth a cob web, and I get two hours of staff help so Al can have his bath, and not one damn nurse will come out nor help me.

I am so sorry my friends. I just feel like I have been beat down with an iron skillet and I can see nothing more anymore but black all around me and huge gobs of gloom.

iron skillet

Do As You’re Told Missy


For a couple of weeks now I have been introduced to the reality of dying and how food and water affect the process. I preferred to ignore this new idea given to me. After all I was not going to do anything that may make my brother feel I was nothing less than a good sister.

We all know that I have done everything in my power to grant Al all of his dreams and wishes before he leaves this earth. I have probably been the worst at spoiling an adult. I have purchased everything he mentioned, only to see that smile one more time.

Now for the past few weeks Hospice, me and my caregiver can not figure out why Al is still lingering. Oh, please don’t get me wrong. I would have Al stay here if I thought there was a chance in hell he could be cured. But, on the other side God would be the one to provide this amazing miracle and I believe in my heart God  has a more important job for him to do in heaven than laying in his air bed.

In these past few weeks we have fought this big bully called MSA. It has shown its ugly fangs. It has done its best to escape any opening it can. It has filled every gap possible inside his body.

For the past eight days Al has kept a temperature. I was able to keep it at a normal temp by using medications, but no longer. We have went from forks and spoons, straws to now syringes for feeding.

Since he is still staying behind, now he is aspirating into his lungs. Every syringe of food and water goes directly to the lungs. There is no pass jail and no collecting of two hundred dollars.

On this past Friday, Hospice stated that Al’s pulse is very weak. Saturday evening Al was breathing very shallow. This is the only was I knew for sure he was still with me as I could find no heart beat and no pulse.

Today the nurse did her thing and then told me to come out to the living room. Uh oh, there’s that tone. I am in trouble. We sat down and she placed her hands in her lap. She took a deep sigh and she closed her eyes for a moment. I know others may not think anything about this part, but I know her well enough to know she was praying for the right words to get through my thick skull.

She started the conversation off with the fact Al is gasping from air and taking huge breaths of air. She said this illness has told the brain to not acknowledge that Al needs to breathe. Then it kicks in reminding him to breathe, thus the big gasping effects.

She said that his pulse and heart beat are weak. Then she stopped and I think she prayed one more silent prayer. She then looked at me and said, ” You need to do as we tell you Missy, so Al can go home.”

I thought, ” What did I do wrong? I try my best to be there for Al.” She continued on with,” Al is ready to go home, but with your constant feeding him and giving him so much liquid, the body is desperately trying to revive its use over and over, but it fails. This in return causes Al more discomfort and misery.”

Of course the little girl inside of me began to drop a few tears. How could I not feed my brother? How could I starve him?

She then went on to say, ” Al’s body is so sick. It doesn’t need as much  food and liquid like it used to. You need to go in at meal times and ask him if he is hungry. If he says no, leave it alone. Don’t try to force him to eat. If  he says yes, offer him a few bites of whatever he wishes for. It will be enough to satisfy him. Or give him the sherbet. It will make his dry mouth feel better. As for the water, give him a half of syringe. Terry, you don’t want him to aspirate to death. This would be a very painful way to die.”

The last sentence she said must have hit me hard. I already had thought for months that Al was struggling to fight this nasty disease. But for me to add to the problem, for me to be any part of him not seeing heaven, was too much for me to bear.

I decided right there and then I would follow her suggestions. For lunch today, he did refuse but he took a half a syringe of water. For supper his answer was yes, he wanted soup. I had made home-made chicken and noodle soup today. I pureed some of it and gave him three syringe full of it and one syringe full of water.

He did not complain nor say a word. He seemed content. I breathed a little sigh of relief as I walked out of his room. He was alright. He wasn’t starving. He is sick and he is ready to go to heaven. He had a bite of food and he was satisfied. I no longer feel the very heavy guilt I had carried previously. I am now able to look at it as helping Al to reach his goal.

M.S.A badge

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

We Have Had Enough!


I feel sometimes, such as today, that I have let so many of you down. I read a lot of comments on how strong I am, and now I am leaning on medications to pick me back up. I realize now that it has been a long, tough road. I realize I am not Superwoman.superwoman

I am so thankful my friend is here, but am already wondering if she is getting tired of being here, or worse yet, bored. Going away to others place to visit is nice, but it isn’t home.

I guess I am just having one of those days. I didn’t sleep well last night. I counted on the caregiver being here today, but with the snow we received, I wasn’t surprised to hear from her she wasn’t coming.

The nurse didn’t come either and with the snow being so heavy this winter, I think I am just about like everyone else here in the Midwest. I am screaming inside, go away snow! We have had enough. Bring some warmth above 10 degrees and let us have a sample of Spring.

Al is basically the same except last night for the first time in days, he whispered to me. I was able to figure out what he wanted. It was a miracle? I don’t know how long it will last but it is nice while it last.

The big goose egg bump on  his head is no longer there. During the sleeping hours it opened up on its own. He has no new blisters which is a good thing. He is staying awake much more than he was.

It is like we are having a couple of days that are like earlier times in his illness. Reminds me of when I was about to deliver for my kids. Those few days before arrival of the baby, I had so much energy I did what ever I could cram into one day.

So like everyone around me, I am fidgety and restless. My car has set for so long that I now fear the tires will go low. It is a terrible car for driving on snow. So I am hoping and crossing my eyes and fingers on seeing a warmer day very soon.cat

Update on my Brother


I am not God, we all know this, but Al has definitely changed as of last night. The first signal that something was not right aside from the usual signs is Al refused his pop and ice-cream.

I have never in my life seen Al refuse pop. For about a month he has been eating only ice-cream and yet he didn’t want that or anything last night.

His heart rate was so soft last night I had to turn the TV off to hear it. There is no longer a pulse in his feet. This morning when I checked on him he was having very rapid breathing. It is slower now due to medications and he is breathing better.

Something is happening and I can not push the fact or ideas away anymore. Although I want him to be free from this terrible, wicked, nasty illness, there is a pain in my gut and my nerves are shot. I don’t seem to be able to help myself.

Along with those feelings and the terribly high winds, the roads drifting shut. The knowledge that my car sucks in the winter holding its own on the snowy roads, I wonder if my groceries will hold out.

I looked at the remaining of January and it is no better. Bitter, single digit temperatures will lock so many of us, including me in our homes.

So life looks gloomy to me today as I sit by Al’s side and watch him leave.

rocking-chair

One Day At A Time


My girlfriend left this morning after I cried too many tears. She did so much in helping to get my mind off of what is happening.

It is bitter cold still. It seems as if this winter is never going to ease with the cold. I looked at the Farmer’s Almanac and this crap continues on through February. What a bummer.

The nurse came this morning. She took off the Texas Catheter and placed a permanent internal catheter in. He did well with it after being medicated for relaxing purposes. His hands were so swollen and he just wasn’t able to release all of the fluids so this is supposed to help.

I am so tired but even more so since my friend left. She never knew what a rock she was and how much I leaned on her. I am so glad that most of us have that rock in our lives.

When the nurse finished with Al she sat and talked with me for a while. She said that she thought Al probably had days, possibly a couple of weeks but nothing in months.DSC00183 Last night Rhino, the cat was getting in my friend’s knitting basket. He was fascinated by the yarn.

rhinorhino 2rhino 3rhino 4

 

I Have To Go, But I Need Ideas


Al seems pretty content in his new air mattress bed. He got his bath this morning. I think he likes his bath aside from the fact he is turned so often.

We have had big issues with discovering new ways to communicate. We have used flash cards.flash cards We have tried to use fingers for yes and no.

We have tried blinking with the eyes, and once in a while, this still works.

We have tried spelling. I am running out of ideas as his voice becomes softer and his lips barely move.

If anyone has had this sort of issue to work with; please share your ideas with me.

I made vegetable soup today. It gave me something to think about other than Al. It was pretty good, but not as good as my Mom’s.  Here is a photo of my soup.veggie soup

Here is a photo of Al and one of his nurses.Alvin and nurse

I try very hard to find a good thing each day and today it was coffee. A sample in the mail of a new flavor from Folgers.folgers

Oh friends, I am sorry to cut this short. I could hear Al’s voice. I went to him and I saw that his hands were more swollen than usual. As I checked him over his one leg is quite swollen. I went a step further and checked his temperature. It is 102.9. I have to call Hospice. I shall talk to you later friends. Love and hugs.