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.




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

Take A Deep Breath

Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady today who is supposed to start Monday. She started off by stating she had questions.

Oh no! She isn’t going to take the job. She has changed her mind! Just when I was about to relax and enjoy the extra help.

She had questions. You see when she was here before Al was a whole different personality. He got angered easily. He could have a very smart mouth, and there were many times he wasn’t so pleasant to be around if he wasn’t getting his own way. Kind of like a kid throwing an adult temper tantrum.

But the illness changed him. He grew weak and his voice softened. He turned mushy and cries a lot. She wanted to know if he stayed in his wheelchair much. She was questioning exactly what she would have to do for him if I left and went to a store.

I understood exactly her alarm and I explained to her how Al is today. Pretty much bed-bound. Eats in bed, watches TV a lot, sleeps about 16 hours per day.

All she could say is WOW, he sure has changed. I said, “Yes, an illness has a way of getting a hold of a person. You will be surprised when you see him again.”

I don’t think she is 100% satisfied but she did say she was still coming Monday. She just wanted her questions answered. I added that I would be here at first with her until she felt comfortable. I told her I would never leave and just throw her to the wolves. I heard her breathe a sigh of relief.

So I am going to relax, take a deep breath and realize God sent this person, end of story, well I can’t help  admitting that I will feel better once she rings that door bell.

Today Al was cranky this morning. He is having more breathing issues. A labored breathing when he is active in any way. I used to hear it off and on but it is pretty regular now.

The Hospice nurse came today and I did tell her about the incident with the shower girl. I also voiced my thoughts on my fear of losing her and not having a shower girl at all.

I called the local Hospice here in town. I was quite disappointed to tell you the truth. I am still weighing the pros and cons but I didn’t like that they didn’t offer any short-term respite and that they had no Hospice House like Al has available to him now.

In fact the more she spoke, the more I shied away. She told me that if I felt I needed a respite break that bad, she would have him admitted to a local nursing home. My breathing stopped, my heart raced as I quickly thought back to the six months he was in a nursing home.

There are three nursing homes here in town. One is supposed to be high standard, that is the one Al was in, and we all know that didn’t work out at all. Another one doesn’t accept Medicaid, so that is automatically out. The last one is a place where you place people whose family doesn’t want them, or there is no money what so ever. I think you can vision what kind of care he would get.

In fact, it is a proven fact that a few  disabled and mentally challenged people who enter never come out again. This is the biggest reason I keep Al at home. I love him, he is safe here, and he is in his familiar territory, plus he is never alone.

I will never unless I lose my mind or become so ill I can no longer care for him let him go back to a nursing home even for a respite of five days.

I was a little surprised at the fact that the director made the comment that if I felt I really needed a break.

My gosh, I take care of everything that has to do with Al. This includes meals, cleaning, changing clothes and bed linens. Grocery shopping, doctor appointments,lifting, guiding, aiding, helping, rolling him over, finances, and with his illness it has turned into a less than peaceful night so my sleep is interrupted, but I will march on like the woman I am. Not giving in nor giving up. God will help me do this and if I get too weak like I have been of late, he will send help,which he did.

Now, just sit back relax, wait for the help to arrive and smile. It looks at this  point I will keep him with the Hospice I am at.great-light-wallpaper-544979.jpeg Ah, just look at this picture Terry and sit back and relax.

Two Lonely Hearts

He gently laid his hand over hers. Looking into her eyes the two smiled at each other. Both Charley and Iris needed each other. The two came from their children’s homes at about the same time.

Both came from different types of  families and yet here they were sitting in the lounge together. Lap blankets placed over their knees, sitting in too familiar wheel chairs they were waiting for their supper.

Charlie had four kids. Three of them lived out of the area and the one he had been staying with lived here in town. Charlie was an old sentimental man. He laughed hearty and he cried gently. He was a tomato farmer in his day.

He picked from the vines and filling his baskets, standing in the hot sun all day he was tough-skinned but a gentle giant on the inside. His wife had died several years back. Charlie continued to take care of his home until he began to fall.

Low blood pressure and the signs of the body wearing down from age led him to his daughter’s house where he was living before he came here to the nursing home. Now he needed more care than his family could give him. His heart was getting tired and moving from room to room became strained.

His daughter sat with him one afternoon and the two talked about extra care. She explained how she couldn’t give up her job and so the nursing home would have to be the next step.

Charlie understood but he cried. He had been so involved with his family and now he was going to be alone in a building full of people. The day to transfer homes came much sooner than he wanted.

Iris on the other hand came from a different situation. Her family consisted of one child and this son lived over a thousand miles a way. He was a big business man who made time only for himself.

Iris lived in a Senior Retirement building. She didn’t have many friends that were alive anymore. She  had worked in a local post office for years and had been lucky enough to get a good pension.

When she retired she sold her home and moved into her new quarters. She hired a housekeeper that came once a week. The helper cleaned her little place and cooked all day preparing meals for the next week. Once the freezer was full she disappeared until the visit.

Iris’s husband had been killed in an automobile accident  four years before she retired. She was sad but she was tough around the heart. When her son moved far a way she got used to being alone.

She played Bridge with the residents and on Mondays she played Bingo. On Wednesdays she rode the community bus which dropped her off at the local shopping center. This is when she would buy things she needed for the days ahead. Her housekeeper was given a list along with money and she took care of the groceries.

This was a planned life with activities daily. Life was not bad but her heart remained empty as her yearning for companionship grew. Iris didn’t realize that her being alone was affecting her to the point that meals became wasted. Naps were taken more often.

Until one day the housekeeper reported to the front desk that Iris wasn’t doing so well. Iris had a health check-up and a mental clinic was involved. The decision was made that she needed more care. It was decided that her mental well-being was at risk.

Iris was transferred into the same nursing home that Charley was living. Iris wanted to die. Although she had some money left it couldn’t buy what she really needed. She remained in her room many days staring at the television. She let the aids take care of her and she was just living.

Some changes had been made and one morning for breakfast Charlie and Iris ended up sitting at the same dining table. It took no time at all for Charlie and Iris to feel connected. Two lonely hearts meeting three times a day.

One day on a quiet afternoon Charlie wheeled himself to Iris’s room. He sat at her doorway watching her. She didn’t acknowledge him as she was napping. This broke Charlies heart and he knocked on the door.

She looked up at him and put her call light on after inviting him in. The nurse helped put a sweater on her and pushed the two out into the court-yard.

It wasn’t long at all that Charlie and Iris were sharing their lives with each other. Speaking about their spouses and children and how they ended up here in the nursing home. From that afternoon in the sunshine, life was brighter.

Each day Charlie went down and waited for Iris at her door. He escorted her to every meal and when she was sad and lonely he would reach out and  place his hand over hers. The two would look into each others eyes and smile.

Nurse Holding Elderly Patient's Hand