A Hidden Road, Being A Caregiver


indiana sayingDo we really know our hearts? Do you or I have an inkling of who we are and how detailed we are made? We are magnificent creatures.

Each of us, having been designed with some hidden talent, just waiting to show the world. I was one of those for years that didn’t know I had a talent. I was brought up to never praise myself in front of others; to do this would be considered bragging.

I was not aware that some talents do not involve actors on TV or singers or playing the piano. It took Word Press for me to finally get it through my head that my hidden talent was caring.

Sounds pretty dull doesn’t it? It doesn’t get bring me stardom, so I will never be rich from it. No one notices outside of those who know who I am. But caring for others replaces the “Me” thought and places it on he or she.

I used to think over twenty years ago that being a caregiver was a piece of cake. I wasn’t in a factory. I wasn’t outdoors in the freezing weather climbing poles. I was inside a warm house, sharing meals and conversation with strangers.

Strangers is such a short-lived phrase. It doesn’t take long at all when you sit and listen to the patient talk that you are drawn into their earlier life. You learn to feel their dreams, and cry with their regrets of growing old and dying.

Yet not everyone can be a caregiver. It is one of those jobs that you best not take it if you are doing it only for the money. Care givers work from the heart for the most part. The physical load I carry is much less than the broken heart watching someone you love or respect or maybe both get worse and die.

Once I discovered the hidden path that makes up me, Terry, I was more content. I was never ashamed again to speak up and admit I am a caregiver, not “just” a caregiver. It is a proud position and I thank God that he chose me to do this type of work for him. When he made me, he put all the right ingredients and he knew I would not fail him.

I have taken care of strangers and I have taken care of family. Of course family is the most difficult by far. More love and emotions, strings attached from years gone by are naturally attached.

Now I deal with Multiple System Atrophy. There are days I cry. There are times I wish it was over. There are moments where I am beat and just want to sleep, but I always go back to the patient, who for me now is my brother, and I look at how brave, a real warrior, he is.

For I have only sat on the side lines and looked through the window and tried my best to understand how he feels. How can I possibly do that? I don’t have this terrible disease. He is the great and mighty fighter. He has fought greater wars than I have my entire life.

Each day when I hear his breathing as he struggles to get in that wheelchair  one more time I feel his will to live. Each day as I see him with fork or spoon in mid-air, and realize that inside he is telling his hand to continue to move towards the mouth, I weep.

The brain is not affected with M.S.A. Al remembers very well that he didn’t used to wet his pants. He remembers driving and working. He remembers having time to himself doing the things he enjoys.

Every second he is awake he is never alone. How humiliating it must be to have your own sister bathing you, changing you, feeding you, but he never says a word. I will ask him if he is enjoying his bath and he will say yes but then begin to cry.

M.S.A. sucks and any of us that are affiliated with it know this. But for my brother, he is a warrior, and for me, I have discovered that hidden road, that secret that was kept silent for so long; until I started to blog

purple candlesAl on SundayM.S.A. logomsa logobook4caregiver

M.S.A. ( Multiple System Atrophy)


I can see your dirty work

Taking more of his soul

Holding his feet with weights

Letting him move no more

You can’t begin to know

What you are doing

To his emotions

As you slither your

Way as a snake crawls

In tall grasses

Not only have you

Taken his strength

You have stripped

His hope

You have caused

Nothing but

Sadness and grief

You will not stop

You will continue on

Until you have sapped

The last breath he has

And he lays down

Never to return.

Written by,

Terry Shepherd

08/15/2013                                                                          Brother Sister Love

The Hospice nurse told me this morning that pain medications have to be increased. The M.S.A. is being aggressive now, taking what ever Al has left to fight with. Al has not been able to move his feet to transfer now for almost a week. Last night when I put him to bed he cried and told me,” I can’t fight anymore sis. I am tired and sick of being sick. Just throw me a way.”

What is Multiple System Atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s.  Although what causes MSA is unknown, the disorder’s symptoms reflect the loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements.  The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain.

Is there any treatment?

There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments available to help people cope with some of the more disabling symptoms of MSA.

What is the prognosis?

The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.

Weekly Photo Challenge, Theme of the Week


catching-fly-12919722I spend a lot of time at home. I admitted yesterday on a post that I wrote that I can get deep into my zone by cleaning. Yes, I know it still sounds just as crazy today as it did yesterday.

But, I will have to let you in on a little secret, I don’t get off on cleaning the entire time I am at home. Sometimes I will bake some cookies and take them in for Al to munch on. But that idea is fading a way. Most times when I go in now and check his drawer of sweets, they are still sitting there.

The day I see that Al has not touched Pop Tarts, one of his favorites, I know the Parkinson’s Disease has truly consumed him. They are still sitting there unopened.

Sometimes I like to get on U Tube and listen to songs. If I think they are pretty awesome, I will transfer them to my web blog, Music That Calms The Soul. There are other times that the stress of Al and the sadness he endures just plain old makes me tired, and I will nap my afternoon a way.

But, now, I have someone else to keep me company. Rhino, my 25 pound cat. He is so fat and I have to say lazy, that if he wants something; it has to come to him within paw’s reach.

Last night he shocked me. I heard my antique bells on the front door. My first thought was that my son’s children had sneaked in to surprise me. I flipped around from my computer desk and lo and behold it was Rhino.

The flies must have really gotten on his cat nerves. He had tried to attack them through the screen. Luckily for me he didn’t indent the screen. He just knocked the front door back a bit and made the bells ring.

Gee, I hope he doesn’t find this entertaining and learn that he can make bells go off and make my own bells go off in my head. It was a quiet night. I had Mash on the television in the background. It was just Rhino and me.

I didn’t realize it but for at least a half an hour I watched and waited for Rhino to do his magic act and let me see him in motion. This is something I don’t see often. He either meows for wanting to be petted, or he is eating.

Even you can get some joy from this. As Ma says in the Golden Girls Sitcom, picture it, 2013, a very quiet house. No noise but the keyboard and Mash. Bells go off and as I flip around I see a 25 pound flying cat doing the disco song to , I’m gonna get you nasty fly.

http://dailypost.wordpress.com,Weekly Photo Challenge ,“postaday″

A Visit With Al


al's birthday partyToday I went to see Al. He was hard to wake up for lunch. It took several times calling him then finally an eye opened. He never even knew I had been sitting there for sometime. We had lunch together and then they weighed him.

He has lost another six pounds. The nurse said this wasn’t bad at all. I tend to disagree with her. How many weeks is he going to continue to lose a few or more pounds a week before they do anything. Or is there anything to do about it.

He only cried once during lunch which I thought was real good. He cried while he told me some new staff was working. They were in his room and the experienced staff were telling him some things so that Al would continue to get good care.

Al said,”They were talking about my past. Everyone wanted to know all the bad stuff about me. They even told them that I wet in my pants.” I explained that they were just informing the new girls of important things about him so he wouldn’t have to stay in wet pants very long.

He didn’t like it so I asked the girls if they could discuss things about him out in the hall where he can’t hear them. Al has always been so sensitive about himself. He isn’t proud that he wets himself or spills food or any other thing that he didn’t used to do.

I wish there was some type of brace to hold Al’s chin or head up. Today I swear his chin was an inch from his plate. He still struggled to get food in his mouth. He ate his whole meal in this position. It makes my neck hurt just seeing his drooped. I guess this is part of the Parkinson’s Disease.

He went out on an outing after lunch so I hope he had a good time. I talked to the waiver people today and the guy told me he was hoping to have all of Al’s data entered by Friday afternoon. I am to call back and check on Friday, late. He also said that once the State received it they legally have 45 days to sign it but it could be back in a week’s time. So I just reminded him that we had been working on this since the beginning of March, so this is why Al is so upset. The guy asked me why I don’t put him on antidepressants. I said, why, he is only sad because he isn’t home yet. Silence, and then call me back Friday. I will for sure, he can bank on it.

Parkinson’s Gave Me Gifts


English: The Parkinson's Disease Society in Va...

English: The Parkinson’s Disease Society in Vauxhall Bridge Road (Photo credit: Wikipedia)

I have had a few people from blogging world and in real life that have told me there is a reason Al will not be going to heaven just yet. Some would say that maybe there were lessons in this sad illness.

In truth, I used to get angry, not at you, but at myself. I didn’t like it that Al was suffering and I was on the outside looking in. I was able to drive and walk, and feed myself. My numb feet from my Diabetes look so small when I see what Al is going through.

But as I look back in time I had to stop and wander a few things. Would I be as close to God if Al didn’t get this nasty Parkinson’s Disease?

I don’t know since I can’t go back and replay the scene. I do admit that I was a floater. I would float in and out of church when I felt like getting up and going. I would plaster my smile on my face and speak to strangers; when what I really wanted was to be home in my comfy clothes. Alone and not smiling.

There is a difference between being alone lonely. When I was in high school, I knew 98% of my graduating class. When I thought about friendships, I was friends with maybe 30%, but digging deeper I was friends with only 1 or 2 people.

I can’t imagine why, but I really did like it that way. Crowds bug me. You will never see me at the big pool parties, or the center of attention in any ring. Today, I am pretty much the same way. I have 1 very close friend, about 10 friends that I speak to on a regular basis, and I know hundreds of you here at WP.

Church, is another topic. Let’s see if I can explain it so you can understand where I am coming from.

I don’t care for church. I used to, but through my sorrow of loss of beloved family and seeing what Al is going through, I cry when I am in church. Then I wish I wasn’t there. Next comes the guilt that is heavily laid across my shoulders.

Mom always told me that a good woman could be found with a strong church background. So, I was disobeying her, although she is in eternal heaven, I know that it is wrong not to go to church.

Now flip that coin over. I am closer to God today than I ever was. I used to go to church regularly but I never gave it another thought once I walked out the church doors until the next Sunday.

Now, I pray and talk to God on a daily, and sometimes hourly basis. I feel like he and I have a connection. He is my rock and I am his sheep. When I get scared I run to him. When I feel weak or tired, I tell him and I expect him to help me. I thank him for the tiniest of things. If I stayed within my budget at the grocery store, I thank him for that. Like I said, I know that he is helping me every minute of the day.

So I know that I am stronger with him today than ever. This is probably the biggest thing Al’s illness has brought into my life. I know there is so much controversy  about heaven and hell. There is one, there isn’t. It is another higher scale of this earth we live on. I have heard so much, but the truth be known, I grew up in church, so I believe in heaven and hell.

Through looking at cute boys, to falling asleep in church, I learned things that stuck with me forever. I am not going to take that one chance and intentionally blow my chances of going to heaven.

What if there really is no heaven? So what? I can look back from where ever I am after my last breath and say to myself, I did Al a lot of good. I was kind to people. I turned the other cheek.

One other point I want to make and then I will shut up, is this. When Al became ill and I learned through the months that there wasn’t too much of a support system out here for me, I got my big defense wall built up, and said I can do it all alone. Who needs them?

Another false belief. I learned it feels good to  have a support system. I don’t have to cry alone. I can pick up the phone and call my friends. I can email you. I have gained so many friendships through WP and Al’s illness, I now realize I will never be alone even when I am sitting here where it is quiet. I have God and I have all of you. For this I am thankful for Parkinson’s Disease. But don’t push it, other than this, I hate his disease and what he is having to live through hourly.

God, Are You Opening a Door For Me?


Parkinson's disease patient showing a flexed w...

Parkinson’s disease patient showing a flexed walking posture pictured in 1892.

There is a huge part inside of me that is screaming and jumping up and down. I am filled with excitement and thanking God for helping me to maybe make a dream come true.

To let caregivers and families know more about Parkinson’s Disease. To have the chance of helping others to not have to travel this long and painful journey to go it alone is a dream I have prayed about for months.

Today I received a comment from Melanie Winrow. Melanie and I met each other several months ago here at WP. She is a wonderful and positive person filled with talent. You may visit her website at;

http://www.writing4oneandall.weebly.com

I was so excited to know that God may be  opening a door for Al, others and myself, I just had to share with my precious friends. Below is her comment to me. You may also be able to see it in the comment section of my latest chapter from Al’s Life Journey, Chapter 6.

Comment:
Terry, I’m starting my own radio show next week (guaranteed
4000 listeners).  Would you like to be a guest to talk about your
book?  I still keep all your writing (a grand total of 355 posts since I
first heard about you) and I can tell you that you have talent.

Over the coming months I will be doing a
number of charity shows (radiothons) to raise money for both Alzheimer’s
(first) and Parkinsons (in a few weeks time).  If you’d like to get
involved with any of that, you’d be welcome (I know you have enough on
your plate.  Importantly, is there anything Al/you need that we can buy
if we can raise the money?  If so, I’d be happy to do so (for example, a
hospital where a friend lived lacked, of all things, an MRI scanner.
For lack of that, she was sent to Portsmouth as the nearest place – and
died en route.  We would have raised the money for a scanner if we’d
known.  It doesn’t have to be anything that big – anything at all that
would make your life (or the lives of other sufferers easier.

I am thinking of you and Al.
Take care
All my love
Mel XXXXXXXX

Pain and Emotions


Parkinson's UK balloons

Parkinson’s UK balloons

I got a call from the nurse where Al lives and she told me that the family doctor had just been in and had prescribed an anti-depressant for Al. I freaked and asked her when they were going to give him the first dose and she said the first thing in the morning.

 

I asked her to please wait until I got back with her. I needed to talk to the doctor. I called and left him a message and he returned my call immediately. I told him about how two years ago Al was last on one of those types of medications. I explained how he had a terrible seizure from it and he couldn’t walk for almost six weeks.

 

I told him my fears and asked him if he still wanted to give it to him after my information. (This doctor was not our doctor two years ago)

 

He said, “Terry I just saw him. He is in so much pain and so depressed and sad. He is on the pain patch and now two more weak pain medications. He can’t take anymore. There is nothing I can do but to keep him comfortable. We have to try to lift some of his sadness. I have weighed the pros and cons and the pros are slightly in his favor. He does have the risk of seizures again but we won’t know unless we try, ok?”

 

I started crying right there on the phone. He told me, “Parkinson’s is a rough and dirty disease. It is beating Al up. How can you and I sit here and watch him suffer every single day.”

 

He didn’t know it but I was sitting here nodding my head. I knew I agreed with him but it just seems there is no licking this disease. I told him that I would call the nurse back and give her the go ahead for the medication.

 

I know I am supposed to be strong but here I am once again, a big weak mess. Watching the life disappear out of his life is harder I think than anything I have witnessed in a few years.

 

 

Something New, Something Borrowed and Something Blue


little animals

Something new

Something borrowed

Something blue

Today when I visited Al

He had something new

To say, something

Borrowed from a

Scary movie I once watched

And something that

Made me blue

For the first time

I knew without thinking

That Al is beginning

Another part of the

Nasty Parkinson’s Disease

I took him lunch

Which I try to do

On Sunday noons

As our families

Used to do

Right in the middle

Of eating his fries

He looked at the floor

And then rubbed his eyes

He asked me if I saw

What he had seen

I looked at the floor

And said no it is clean

He said little animals

Were all over the floor

But when he rubbed his eyes

And looked again they were never more………….

Terry Shepherd

04/14/2014

I Cleaned House, No Not My House!


US Navy 110308-N-7491B-039 Surgical technician...

Today I cleaned house. Oh no, not here. I already did my Spring cleaning. I mean Al‘s room. I took in some pairs of shorts and tank tops. He saw me when I entered but I didn’t get a smile or anything for a few moments.

Then he started crying. It was obvious that he had been upset long before I arrived. I put down my goodie bag and sat down beside him to find out what was on his mind. What was the culprit you ask? Good question and I am going to spill the beans right now. Wetting, yep that’s it, wetting his briefs.

For some reason, which I will blame Parkinson’s Disease this past week there has been a change in the bladder area. He was so upset and embarrassed because he had wet himself.

I tried using different reasons as to why this was happening. I was hoping he would reach out and grab one of them but he didn’t. It seems what is happening is that the knowledge of realizing he has to go pee comes late in the connection of the brain.

He realizes he has to go and either he doesn’t remember to put his light on, or he puts the light on and no staff arrive or he just gets late notice that he has to go. I do know that he was sitting there waiting to be changed but there was no call light on.

The light bulb inside Al’s head didn’t go off so I reminded him to push the button. I looked at his clock and it was six minutes until help arrived but it was too late. This in turn brought about more tears.

This is  happening about every time now when he feels the urge to go potty. I think it is a combination like picking the Power Ball numbers. A little Parkinson’s, a little more PD for not using the call light, and a little bit of no staff.

I finally think I found a reason he was able to grasp. I explained that many of his new friends at the Day Program wore briefs and had accidents too. I told him that no one knew they were wearing briefs as it was a hush- hush thing.  I asked him if he knew this information and he said no.

I seemed to be able to help a little so I went about tearing into his closet. I pulled out all long sleeve shirts and heavy-duty pants. I replaced them with the clothes I brought. I took  his winter coats and replaced those with a light-weight Spring jacket. I washed down his bed side table and placed the tower fan for him. Yes, he is still sweating a lot. I learned the heart is causing this excessive sweating.

Without him realizing it I made a trash pile of old newspapers back from when he first went there to live. I found brown paper sacks where he had won goodies at Bingo and they were full of empty wrappers and even one nasty looking banana peel. Yuck!

It was time for lunch then. I had called in and ordered a lunch this morning so we ate together instead of me watching him eat and wishing I was. He did pretty good with lunch and didn’t make too much of a mess for this meal.

His driver appeared and was waiting so she could take him to Day Program for a couple of hours. I pushed him back to his room. He had to go potty he said but he had already wet down in the lunch room he admitted. This caused more tears and again more explanations.

I put the light on for him and seven minutes later someone came in. When help finally arrived I asked her to change his heavy pants into something more appropriate for the weather. He chose shorts over thinner pants. She changed him and he and his driver were off with him in tears, still embarrassed about his accident.

I am glad he was able to go. Hopefully his mind was more occupied with friends than wetting. I was told that I needed to take his two walkers home. The doctors orders had come in and there is to be no more walking and he needs to be pushed everywhere in order to save his heart.

I looked like Santa Clause when I left. The car was stuffed with two walkers and a big trash bag full of winter clothes. I finally got the car packed down and headed for home. When I got  inside the phone was ringing. It was the facility.

There was an appointment waiting for Al to have a scope done for his swallowing issues in the esophagus. I am not sure if I made the right decision or not but I have not heard Al complaining much about swallowing since they changed his diet to puree meat and mechanical soft. I also now know that his heart is working over-time and has been damaged.

The doctors would put him to sleep to look down his throat and I chose not to put him through another procedure at this time. I called the number I was given and spoke to the nurse about my concerns. I asked her for her advice. She explained that at any time if things looked worse we could reschedule.

I felt comfortable with this. He wasn’t going to be turned down for an appointment at a later date, we were just putting it on hold until things progressed more in that area.

I felt good about today’s visit. I cleaned house for him. I tried my best to get him to understand the complications of PD and wetting one’s self. Lastly, he was out on an outing. I can tell he does not feel well but at least he was talking to me and he ate all his lunch today.

Al Fell Again and Still I Was Not Called Right A Way


The Cleanest Floor You Will Ever See

I haven’t posted since earlier this morning for two reasons, maybe I should say three. 1. To give you all a break from my frequent posting. (I’m sorry, I can’t help myself. I guess I am a chatterbox.)

2. I did some remodeling in my living room and that took the bigger part of the day.

3. I received a phone call this morning from a nurse at Al‘s facility. This call has been on my mind all day. Let me tell you something, there is no rest on the weekends for the wicked. Except I am not wicked.

At 1am in the morning someone noticed Al was not in his bed. They went to his bathroom and he was on the floor. The report was that he was on hands and knees so they didn’t consider this a true fall. They said he was fine. She told me he had a small rug burn on him.

I am thinking small as in the small bruises that he received two weekends ago when he fell. Those bruises were the size of peaches. I kept fussing with myself whether to go in or not to see him. I was wrapped up in my home project and they told me he was fine.

I did not end up going but there is part of me that wishes I did. Tomorrow I will be in there for sure. The nurse told me that Al got rude with her. I hear this word quite often, rude. Al’s mood and personality has seemed to change these past weeks. He smarts off they say. He is rude I hear from them.

I called a good friend of mine who has a family member who has Parkinson’s farther along than even Al. I asked her if this could happen, the personality change. She said absolutely yes. Caused from PDD, Parkinson’s Disease and Dementia.

She said that he may have said it and then possible later he wouldn’t even remember it. I know different times I have scolded him for his rudeness and he starts crying immediately stating he never said anything like that at all. I back off because I have no proof one way or another.

The strange thing to me about the call is I don’t like being called 8 hours after the fact. I have told them repeatedly to call me as soon as they know he is stable. I don’t give a hoot if it is in the wee hours of the morning or not. I want to be notified. I want the choice to either go in or not to check it out. This is not the first time this has happened.

His last fall they told me almost 48 hours later. The other thing that bugs me is how in the world did he get a rug burn? The only rug or carpet in the whole building is in the hall. This has me puzzled if he was on his hands and knees. Did he fall and was trying to get up? Did he go head first like he usually does? But still, how did a burn come on him.

The nurse told me that he told her he wasn’t going to  use his call light anymore because he waits so long for staff to help him that he pees his pants, and he gets very embarrassed when he wets himself. The wetting himself is happening more and more often. I don’t think it has anything to do with Al holding it or not. I think it is the PD.

I have asked before about putting a Bed Alarm on his bed and his recliner. They declined my suggestion stating Al doesn’t want it. They think he will become agitated and cause more rudeness or attitude for them. I say get the alarms and use it. The loud noise may scare him enough and remind him to put the call light on. He does forget to use the light. This has been an ongoing issue for some time.

I asked his neurologist about it last week and he said Al doesn’t want to fall intentionally. His Dementia is causing him to forget. In Al’s mind he just assumes he can walk so he gets up and tries.

Monday morning first thing, I am calling Al’s doctor and telling him about the falls that are happening more and more. I am going to ask him to write a doctor’s order for bed alarms. I have no doubt he will do this for me and Al’s safety.

Why did they wait so long to let me know…………Sorry friends, I am still upset over this. Tomorrow a new day, a new challenge, and a promise of hope.