Lessons In Every Situation, Roar Into 2014


2013 for me. I don’t remember a whole lot. Life seems quite a blur. Al was in the nursing home from January until June. I remember plowing through snow and cold to go see him. I never wanted him to think I didn’t care.

Groceries were not bought much. The bills remained the same most of the year. The TV shows got sillier. None of them really grabbed my attention except American Idol. Somehow looking forward to two nights a week to this show made the winter months go by faster.

June came and Al came home and then life was still not that bad. Life is never as bad as we think it is in the moment we are living it. When we move on down the road and are faced with different challenges, we sometimes look back and think, I wish I could go back to that time.

For a while I was still able to get Al in the car. We went to some antique shops. We went out to eat. I was even able to take him to one more big car show. We went places and Al was placed in an adult program where he could socialize with others. Life seemed pretty good.

Then it was like a blink in an eye life began to change for the worse. Al’s MSA (Multiple System Atrophy) seemed to really kick in. No longer was I able to get him in the car alone, and with no help we had to give up the outings. Life became a little more quiet for him and me.

In no time at all Hospice was involved. Al went from being able to shave himself to me shaving him. He no longer could brush his teeth, I did it for him. He went from finger foods to some help with eating to now; which I feed him all of his food and drinks.

He went from a being able to stand with assistance in his wheelchair to his legs no longer holding him up. Today, he is bed bound. He gets all of his baths in bed. Only a month ago he was still able with lots of help to get a shower.

Now he stares at the TV when his vision will focus. His eyes water, his fingers and hands are locked in a prayer position. His legs are curled in a fetal position, not bad, but getting there.

Instead of him and I decorating for Halloween and Christmas, I did it alone. Al was in the hospital during Thanksgiving and he slept through Christmas. Family came but Al remained in bed.

I have learned to lean on God more and more through this illness of Al’s. I have been angry at God, screamed at him, asked for forgiveness for not being as faithful as I could. I have learned to lean on others for help, such as Hospice, homemakers and ministers.

I have learned who my true friends are and who I can count on when in need. I have learned that I have a huge support system with many people on the internet. I have been shown how many care about Al by all the cards and gifts that have been sent.

I have been taught that to gain strength, all I have to do is pray about it. I have learned how to cook for one and puree for Al. My laundry has doubled, cleaning is still going strong. I am tired and now try to nap when I can. I have learned that the house will always be waiting here for me. The dirt is going anywhere.

I am glad that this year is ending tonight. I would not really want to relive it again. I am hopeful that things will be brighter in 2014. I pray that the Obama Healthcare works itself out.

I hope more lean on their own strength and realize they have more to offer this world than they think. I hope Al finds peace and is reunited with our parents. I pray that I will be able to move on and remember Al with smiles. I hope jobs pick-up and crime is less. Schools offer the basics and we have less drop-outs than ever.

My family will expand by two this new year. I wish for my own family good health and common sense, so that they can survive yet another year. Life isn’t easy, it won’t be from this day on. But with careful consideration and a loving Mom standing behind them, they too will find what they seek.

I hope that each of you stay safe tonight. If you are going to drink, please don’t drive. Beware of your surroundings. Don’t be too proud to take a taxi home if you need to. Tell you children you love them. Hug your parents. Stay positive. We are in this together no matter how many miles separate us. It is up to you and me my friends, to make or break this world.

So to each one of you, Happy New Year, 2014.

P.S. Don’t forget to change your calendars and write 2014 on your checks tomorrow.

 

 

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26 Hours And Still Awake


Hi my friends. I have now been up for over 26 hours with dozing in between. It is not me only doing this, it is Al too. Hospice says it is a restless syndrome right before the dying. I don’t know what it is and I can’t identify it any other way than fidgety.

Yesterday I posted but then I deleted it. It was a post on my feelings at the moment and not the entire scene. I guess I don’t do well when I have no sleep. I am crabby and can be short-tempered. I cry and I feel guilt at not being able to help Al in any way.

He is in God’s hands now and all I can do is make sure he is dry. Comfort is not something I can give him it seems. No matter what position I place him in he is not comfortable. I can sense his fear of dying but no matter what I try to say to make it feel better, it doesn’t work. Once again I think this is between him and God.

I guess when I am weak I become fearful, and this is why I deleted the post. I kept thinking afterwards, what will my friends think if they learn of me being angry, frustrated and sounding whiny.

Al sleeps about twenty minutes out of a couple of hours. He is on very high doses of medications but they aren’t working. Hospice was here for several hours today. The Hospice minister dropped by to see Al. Al had requested my son to come by a few times. I asked my son to please come over and he did.

The Hospice team, the Doctors and the Pharmacist are all working together and by Monday sometime there is to be a new medication that will enable Al’s body to go into a deeper sleep to help him pass into the dying process.

Al had been begging the Hospice nurse to give him a needle or a shot to end his life, but of course it is illegal here and the nurse told him she could not help him out. This only agitated Al more and this in turn caused more agitation from him.

Many times today I have cried out to God, what are you waiting for? He wants to come home, help him. I can’t sense a God here in our house, or even in Al’s bedroom. It doesn’t mean there isn’t a God here, it just means I feel nothing but tiredness and I feel almost numb anymore.

I have seen Al reaching up to the ceiling with his arms trying to leave. Talk about a tear jerker. It bring tears to my eyes instantly as if I am watching in slow motion a movie that is playing out and I have guessed the ending but have yet to see it.

I am not sure what I am running on. I can only imagine what Al is running on. It must be burnt fumes of earlier energy. Al is wetting extremely heavy. Almost every fifteen minutes he has soaked a brief. He is still drinking and eating but not very much. He has some sort of brown colored stuff that is coming from his mouth.

I keep dabbing it clean with toothettes. His mouth is dry but I imagine part of it is the medicine he is on. He sweats and then he freezes. He stares at me with those big blue eyes and when I asked him what do you want to say, he says nothing.

Rhino the cat will come in and jump on my lap and put his paws on my face or give me a kiss. I know without knowing cat language that Rhino feels the emotions running throughout the house.

I am ready to let Al go. I can no longer stand to watch his suffering and I have told Al many times to please go see Mom and Dad. Al has told me several times today that he loves me with all of his heart. When Randy, my son came to see him, he told him goodbye.

This tore at me so bad I broke out crying right there in front of Al. So life here at our house is its own living hell. It includes a lot of love, heartache, anger, tears, sleepiness, restlessness and any other emotions you can think of.

I will try to post once a day for now. Al does not like to be alone. He can be asleep and as soon as I tip toe out of the room he is wide awake. I love all of you, my friends and I think of you often.DSC00165DSC00162M.S.A. coverM.S.A. logopurple candles

I Was Told I am JUST a Sister


I hope I don’t take more than one page to get out all I need and have to get out. This morning I awoke to a nice calm morning. But things change as you know. We never quite know what each day holds out to us. I guess that is where we really need to count our blessing other than those big moments.

I was drinking my coffee and talking to some MSA friends on here when the phone rang. It was the Hospice Hospital. The doctor was on the other end of the line. She said that she was going to keep Al another 24 hours as they had made a few medication adjustments and wanted to make sure he would be alright.

This is cool. I would hate for him to come home a mess. So he is coming home tomorrow. The next few sentences out of her mouth began rubbing me the wrong way. Soon I was frustrated then I went from that to plain old angry.

She told me Al was doing real good. She explained how their nurse aide had said he walked four steps and had no issues. This is when I started to become frustrated. Al doesn’t take four steps here at home. In fact he does need to take three steps to get from his wheelchair to the shower chair but he gets very upset because it hurts his legs and feet so bad.

Al looks like he is walking on his heels because of his feet contracting from this disease. I see his heels and they are so red. I do try to get him to continue with this as long as possible because he gets so much cleaner when he gets a shower over a bed bath.

She told me that he became upset and angry over a football game last night so she gave him one of his new medications and that didn’t work; so she doubled the dose and then he became quiet.

Alright, I am just listening and not speaking as she goes on to tell me how amazing it is that he is so good. She then changes the topic to stating she had called Al’s regular Hospice nurse and that nurse tells her that Al really isn’t declining much. She says he is  pretty much the same as when he started Hospice.

I think my eyes probably got big as my daughter always tells me when I start to get upset. She goes from there to telling me that I need to start remembering that she is the doctor and all I am is the sister.

She stated in no uncertain terms that I directly disobeyed her orders to double up Al’s pain medication and then I quit being quiet. I told her that I had went up to almost double the first time she wanted it upped on Thanksgiving Eve. But after I saw how he changed and he started hitting himself and screaming and cussing I was not doubling the dose within an hour as she wanted.

I explained that I did not want to see what damage he could do to himself over this. I asked her to try some other medicine but she was persistent even after Al was beating himself up.

So on the phone she was scolding me reminding me that I am nothing compared to her. Her next blast of words were that he isn’t declining for what he needs to be. She said she was having a meeting this Thursday with Al’s regular Hospice nurse, who already told her this morning that Al isn’t declining and she was 90% sure she was going to release Al from Hospice.

My heart sunk. I know what I see here. He has gone from five days at Day Program down to two half-days because he is declining and becoming weaker. He is almost 90% bed bound except on Day Program days.

He can no longer stand more than a few seconds and when he does it is on his heels because of his feet contracting. He has to be fed liquids and foods about 75% of the time. Last month he could still feed himself most of the time as long as it was finger foods.

His medications have been changing all the time because pain continues to get worse. His entire body is contracting. His head hangs on his chest. You can barely hear or understand what he is saying.

But according to the doctor he is not declining. She said that he will probably have a few more months to live. All of a sudden I was enraged. I felt although I can not prove it that this was to get back at me for not following her orders, since she did make that perfectly clear.

She stated that she would only release him if I promised to her in writing that I would follow all of her orders when he did come home until he was dismissed from Hospice.

All I could think of is I am going to be forced to place him in a nursing home. Why? Because it takes a lot of money to purchase briefs and pads.

They send a case at a time when they send his briefs. He wears two types, pull-ups for Day Program and tab types for when he is home in bed. He also uses quite a few chux pads. The bill is about two hundred dollars every couple of weeks. I can’t afford that at all. I already pay for what ever he needs here at home, food, clothing, anything that Hospice or Medicare/Medicaid doesn’t cover.

She said that she will let me know this Thursday her final decision. I hung up and sat here and almost started crying a pond of tears but I had to leave to go to the pharmacy to pick-up my medications for myself since Al will be home tomorrow I won’t be able to get out as easily.

When I went to the pharmacy the owners and I were talking about it and they told me to talk to the Hospice right here in town. I asked them, ” Why should I?  If Medicare won’t consider him acceptable in another county, they won’t here either.”

The owner convinced me to at least try. Just run over there and talk to them is what he said. I grabbed some lunch because I had forgotten to eat breakfast in the chaos of things. Then I went over there.

I was very upfront and honest. I explained everything that had been going on today and for the past six month history. She asked me if the doctors had ordered gel pain medications and I said no, and she wondered why.

She said from everything I was saying he is declining and they accepted Al in their Hospice care. We hugged and I told her as soon as I got home I would call the other Hospice and tell them the new Hospice information, which I did.

Now I am in waiting time. Waiting for Al to come home. Waiting for the two Hospices to talk to each other for dismissal and admitting. He will still get three showers a week. He will get a nurse in this area for visits. I will even get home maker time hours for me. From what I learned they will send someone out to tidy up his room or something.

So I had no trouble calling the now Hospice. If I had to do it over again, I wouldn’t change a thing. I may be the sister but I know how he reacted to the increase of medication. Even the Hospice nurse that was here was shocked at how it was a negative reaction to the increase of meds.

I know in my heart this doctor is upset with me because I didn’t follow orders, but hey, this is a real person, and my brother. He is just not another case. So I am calmer now and this is good for all around. I made the right decision and as far as the Hospice Doctor is concerned…………she needs to remember why she became a doctor. You just can’t shut up noisy patients at any expense, pain is pain no matter what title you hold.M.S.A badgeM.S.A. logoal and rhino4

Robe or Clothes


Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressure seems to be alright and my sugars are normal and yet I feel like crap. I imagine part of it is the weather and my nose and sinuses do not care for the heat on in the house.

The other part is probably just me being drained, tired and exhausted. I ran yesterday, Thanksgiving on four hours of sleep. I crashed at 9pm and slept until 8am this morning. I felt fine when I got up and then about an hour later started feeling like crap again.

I called the Hospice house last night to check on Al. The nurse said he had not had a good day, but at this time in the evening he was starting to calm down. I learned they had changed his one pain medication to another.

I had thrown such a terrible fit about them trying to drug him up so bad they discontinued that drug and changed it to another. But the issue is bigger than that. You have a patient who is in pain 24/7. His body is constantly contracting and shrinking.

Muscles are hurting from non-use and then you have these terrible medications that can actually make a body worse. Hyper or slowed to the point of barely moving.

For me I find myself having to make decisions for another soul. Although his life is truly in God’s hands I play a big part in it too. The quality of life is the teeter totter. Balancing between comfort and someone you begin to not recognize in order to get that comfort.

This to me is stress at it’s best, which like I said before, is probably playing a big role in why I don’t feel good. Just because Al isn’t here, doesn’t mean my own body is in a stage of miracle healing. The side effects of being a caregiver can take time to heal to a point of what it was before.

I called Hospice again this morning to check on Al. They stated they can not get him up to go to the bathroom because he is too weak. This is what I am talking about with the medications.

Is it the MSA progressing to the point that he can’t stand or is it the side effects of the new drug. I hate it when they express they are giving him a new drug, which in truth is just another name for the same drug.

Same family of medications, but more severe side effects. I researched it to death this morning and it is dangerous. So where does the teeter become less tottering? I don’t know.

The helper is coming over today for a while, while  Al isn’t here. We are going to try to arrange his  room so a wheelchair and things he needs in there are easily obtained. I hope we can figure everything out.

Al throws such a fit and I also realize how much his vintage cars and coca cola mean to him. I also realize that while he is in bed more and more he enjoys looking at his treasures. But then you have the issue of needing more space as he is taken care of more in his bed.

The wheelchair needs to be able to have enough space for when he needs it and the caregivers need space also, so we shall see what we can come up with for the benefit of Al and me.

With Thanksgiving being over I have decided to be lazy today. I didn’t go to any stampede black Friday sales last night or this morning. I am still in my robe. I am expecting a delivery for supplies for Al. I really don’t give a hoot if I answer the door to him dressed this way or not. Who cares? If he wants to take mental note that a caregiver answered the door in a robe, so be it. Let him try being a caregiver.

The sun is shining and I am trying to get my mood and smiles to shine also. It is  hard though, I am just plain tired. Al will probably be home Monday, so I will tend to relax, clean his room, and maybe squeeze some time in Christmas shopping, who knows,,,,maybe I will just stay in my robe until Monday.robe

 

Not a Good Day For Al


Tomorrow is Thanksgiving and today, this very minute I am thankful for being here at home and not in a hospital with a heart attack or stroke. Today has not been a fun day. Al woke up with pains.

Pains everywhere from his feet to his neck. He struggled with breathing. Even when the Hospice nurse came today Al showed signs of breathing difficulties and pain. I don’t understand. I just don’t understand how they brush it off.

As his sister it was hard not to get overly stressed. He went through periods of burning all over he said to heavy sweating, to not eating. The helper was here today and she not only helped Al she helped keep me calm.

I got dizzy so much. My sugars dropped. I ate to bring the numbers back up and started to feel better than Al would start into a whole episode of pain all over. His head hangs so far down on his chest with all his skin hanging there it makes it so difficult to hear and understand him. His legs are contracting, his feet are contracting. His one arm won’t work anymore. It is just hard for me to watch.

This afternoon he started sounding like he was aspirating some. It looked like his mouth was drooping and he was drooling real bad. Breathing was hard.  I finally called Hospice back and asked for a nurse to come. The charge nurse said alright but a few minutes later she called me back.

She stated the nurse that had been here three hours ago said when she left Al was nice and calm, that maybe I just wanted him to go to the Hospice house. I exploded over the phone.

That conversation of the Hospice house had been brought up with the nurse earlier today that was here and I made it perfectly clear that I wanted Al home for Thanksgiving. I was mad that this nurse of Al’s would imply this after our conversation.

I started yelling at the charge nurse. I don’t know if Al will be discharged from this Hospice or not for my yelling at her but stress, worry and crazy words from her made me tell her about MSA and how it can change hour to hour.

She said she would document that I called and the symptoms I had told her. Al was given higher doses of pain medications and he finally fell asleep.

I keep asking these professionals, what is happening? what is happening? I don’t think anyone knows. I think they suspect that I will just go with the flow. Maybe a part of them is right, he has this disease that is incurable and there is no way to help any longer except pain medications, but does that mean I understand?

I am scared when Al gets like this. I can’t help it. Burning all over, pain levels that are higher than a six out of ten. Not eating, tears, crimson face, sounding like he’s aspirating?

The helper is going to come tomorrow to get Al up and see how he is. I told her she then needs to go home and be with her own family for the holiday. I am tired, and am thankful that I got so much of the food preparation done for tomorrow.

I am thankful for being here and Al being here with me, but I am scared, I can’t help it. I feel like I am walking in a dark room feeling for familiar things but there aren’t any, and when I don’t have Hospice nurses to count on, I feel totally alone and lost.blue rose