Hi all my friends. I was very upset today. Not with any of you, not even with the facility. I was upset because I had to pay family gas money to bring Al home. Maybe I shouldn’t have been but I was.
With me getting over that quickly I was calmer than I…
Hi all my friends. I was very upset today. Not with any of you, not even with the facility. I was upset because I had to pay family gas money to bring Al home. Maybe I shouldn’t have been but I was.
With me getting over that quickly I was calmer than I thought I would be. It took me no time to gather Al’s belongings and get them in the car. By the time my helper arrived, there was only one shelf to take off the wall and a three drawer plastic cart left.
Coming home was very warm and I knew Al was paying the price when I looked at him but once we got inside the house the air was on. He wanted to take a nap immediately. I got him settled and then started to put his belongings a way when the Hospice nurse knocked.
She and I spoke for a couple of hours. She wanted to rid some of the extra medications. Believe it or not he is on 18 medications. But when she went through them one by one each one was in three categories. They were either for pain, heart, or blood pressure.
It is amazing at what we put in our bodies to be able to live a while longer when we are ill. I was shocked at how much he was taking but sad that we couldn’t take him off any of them.
Instead of calling 911 to take him to the ER I now have instructions to give him pain medication from here, one of them every hour for two hours, call the nurse on call and wait. In a way it is nice to have your very own nurse involved and at your beck and call, and in another way, it eats at me a little that I won’t be able to take him to the ER in case he is having a heart attack.
But the truth be known, as I said before, the ER trips are for the internal tremors. And we all ready discussed the pros and cons at this point in his life.
The nurse and I discussed routes to go now that they are in charge. I won’t be taking him to the family doctor any longer. Hospice will get all of his medications. It is nice to have someone on my side.
I bet the company that brought the wheel chair and bed yesterday is perturbed. I didn’t realize that when Hospice is in charge they get the medical equipment, bed, wheel chair, briefs, gloves, and bed pads. Now tomorrow the old company is coming to take back the bed and wheel chair and the new company is doing a pretty good job at being here at the same time setting up their equipment.
Al ate a small supper but did finish it. He had a cut-up in tiny pieces burrito, cottage cheese, and get this, a donut, one of those dunking stick types. He did pretty good. He didn’t want to go to his room.
It made me feel good that he wanted to stay out in the living room with me. He had me put him in front of the TV and although it was very difficult to hold his head up, I think he listened, but I have to be honest, most of the time he slept.
I finally talked him into going to his room about 9:45, and he is sitting in his new lift chair, which by the way, it made it real easy to get him in it. He is drinking his diet coke, but when I peeked in a second ago, he was asleep. He sure does sleep a lot.
It sure is good to have him home again. I don’t care how sick he is, he is where he is loved and between Hospice and me he will get the best of care. Monday morning he gets on the bus and starts Day Program.
I wonder what life would be like if I was not a believer in Christ. Would that red-horned creature leave me alone? Would I be able to do what ever I pleased in life with no consequences, or maybe no conscience?
Just when I think I am climbing the mountain and I see the top not too far off, I stumble over a rock again and come tumbling down.
I have everything running smooth. I have done all I have been asked to do. I even bought the groceries for Al today. I am so proud that I finally got this task done and forgot nothing.
The first response on their side was pretty much negative. No time, no extra spaces. As we talked longer and longer she and I clicked.
In the end she ended up telling me she would make a phone call to the lady working from the day program and see what hours were available and she said she would make something work out.
I knew that there was a chance that Al may not actually go in at 8:30 am as there are many wheel chair riders and not enough buses. It goes on and on. I have to remember that this is a big company.
Then the bomb fell. She told me that the community I live in is a place they are not welcome to bring the buses back into. She said the owner is something else and that he is mean and rough and I have to agree. I can remember back to last summer when we had the wheel chair ramp built for Al. The owner stopped by and told me I had to tear it down immediately.
Now I knew that I wasn’t going down without a fight. He and I argued, he threatened to kick me out that night. I knew he could not legally do this over night but I just really didn’t need the hassle from him.
I understand that he is mad at the world. His wife was placed in a nursing home last winter and he has been mean and an ugly monster ever since. He will come by and practically measure my grass that grows around the bottom of the ramp.
Oh don’t get me wrong. He isn’t just picking on me, he picks on who ever is near him on any day. I just get tired of the fight.
Now this is where I asked the question in the beginning. Is God constantly testing me to see what direction I will take? If I didn’t believe in God would I be faced with all these challenges? I will not turn my back on God no matter what, or I should say I hope I never do.
I will fight this battle for the life of my brother. I know that I can not get him in the car and down to the main gate every single morning alone. I need that bus. It will make it easier and safer for Al to go straight down the ramp onto the bus ramp.
I have called the owner’s assistant manager and I am waiting for him to stop by. He is out here in the neighborhood. I have a little more faith in him than the owner. At least he smiles. But on the other hand he will have to run it pass the owner.
I need a written letter giving permission for the bus to stop here at the house. What I really need is tons of prayers to turn this monster into a prince and say yes. Can you help me by sending lots of prayers?
- Hippo Trot (gottafindahome.wordpress.com)
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- Primary Health Care Agency distribute wheel chairs to 20 polio survivors (renewnaija.wordpress.com)
- Handicapped Man Collects $100K A Year Being Homeless (kiss951.cbslocal.com)
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I forced myself to do something or not to do something today. I did not go see Al. You may think why would you force yourself that?
Well, I just needed the break. I had to take some time a way from the one thing that brings me down so quick. Not Al, of course, the facility itself.
Being in a facility can tend to take a way smiles and laughter. You walk in and immediately see elderly people sitting alone in wheelchairs. You may hear a few repeating the same sentence over and over. It seems they are talking to non-speaking walls.
Many sleep in their chairs or sit in their rooms waiting to eagerly go to bed or to a meal. So many sad faces. Lifeless bodies consuming a colorless chair with two big black ugly wheels.
Then I step into Al’s doorway. His roommate is quiet as usual, most likely sleeping with head tilted over in his wheelchair. Al is behind a divided curtain either picking his head, or crying or asleep in his bed.
I just couldn’t do it. I had to step back a way. I am struggling with the continuing of writing my two books. I wrote a new chapter to one of my books today, which by the way I have finally titled. I am on chapter 21, which I published today. It is now called A View Backwards.
It took me a large amount of time to write it. It isn’t that exciting of a chapter but my mind kept drifting elsewhere.When I completed the chapter, I made myself leave my four walls. I just got in my car and drove. I wound up going to some garage sales. I found one thing in three sales. It was a bed tray or you may call it a food tray that will go over Al’s lap while he is in bed. He can use it to prop his Bible and read or eat snacks or a meal on it if he is not feeling well.
On my fourth and last trip to the sales I found two things for me. I found a Redwood chicken. I like to collect chickens and roosters. I don’t have many, but I don’t like the modern silly looking ones. I like the oldies. Then I also found a clock. This clock took me back to six years ago. I was caring for a man and wife. I took care of them for three years, or maybe it was five in total, I can’t remember.
Anyways, he had this clock that hung above his television. I always admired it and the Mr. and I used to talk about it quite often. I am sure his is much older than mine and I believe his is a little bigger. I assume one of his children have it now as both of these dear people passed a way.
I prayed like a silly school girl that it was in my price range and that it worked. I was like a kid in a candy store, slobbering all over myself. I walked up to it ever so slowly. Afraid that it was out of my reach.
I touched it. It was a nice heavy clock compared to today’s clocks. I picked it up and ran my hands over the inlay and the mahogany. It felt so nice, like it belonged to me. He and I became friends instantly. I couldn’t put it down.
I asked the lady how much it was, and I thought my legs immediately turned to jelly. I could feel them wobbling as I knew I could afford it. I watched her gently take it in her arms and plug it in. Oh my, it worked also. I told her I would take it. I paid and smiled all the way to my car, like two old buddies had just reunited.
While I was sitting in the car admiring my prize I thought back to the man I had taken care of and how proud he was of this same clock. He had been in the war also. Each Memorial Day I took him to the cemetery to reunite with his friends.
He and I spent hours on those special weekends talking about his war days. I thought ahead to where Al is sitting right now and wondered how many of those empty faces are also veterans.
The stories that are locked inside their head would give me goose bumps when I think of what they did to save us. Maybe if we just took the time and visited these lonely veterans, we could relive some of what they went through.
There are shelves of books and broken chapters hidden deep inside. Willing to come out if only given the chance. My first husband served in the last few years of the Vietnam War. It seemed to me that it was more like a party for him instead of a war. The bad days were over, and life settled down. He was a policeman over in Stuttgart Germany, where I had the opportunity to live many years ago.
My second husband had no heirs so he didn’t go. My father had us children so he was never called. Al had no heirs so he never received the letter either. But thanks to the elderly I cared for so many years, I had a front row seat and got to see the movie in full living color.
God bless our Veterans. They are our heroes. So why do so many people shove them to the back corners of life and watch while they slowly sit in their wheelchairs waiting to die. Waiting for someone to say hello. Waiting, just waiting.
- Don’t call it a wheelchair, it’s a Movi (photos and video) (al.com)
- What Is Best For Elderly Care, Nursing Homes Or In-Home Caregiving? (tracysmith.co.uk)
- Wheelchair Stolen From Elderly Woman (wnep.com)
- My Brother’s LIfe Journey Chapter 2 (terry1954.wordpress.com)
- Disabled Veterans (thepaintballgirl.wordpress.com)
- The ALS Association Raises Awareness About Military Connection to Lou Gehrig’s Disease this Memorial Day, ALS Awareness Month (sys-con.com)
- Toddler’s Wheelchair Still Missing When Stolen SUV Found (denver.cbslocal.com)
- In A Veteran’s Mind (terry1954.wordpress.com)
- Chuckle for the day! (kimmiecats.wordpress.com)
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.
- New device uses sensors to evaluate and treat patients who have trouble swallowing (medcitynews.com)
- Swallow secures $1 million (jsonline.com)
- What a week….from a Parkinson’s Daughter…. (camsgranny.wordpress.com)
- Funding, doctors needed if brain stimulation surgery to expand in B.C. (vancouversun.com)
- Through The Eyes of This Calvinist with ALS (calvinistview.com)
- Parkinson’s disease affects Blacks, men (louisianaweekly.com)
- The Council (calvindart.com)
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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.
- Husband’s Parkinson’s disease inspires wife to create special shirt (newsobserver.com)
- ACADIA Announces Presentation of Data from Its Pivotal Phase III Parkinson’s Disease Psychosis Study (dailyfinance.com)
- Grieving son’s fury as frail dad dies in care home after suffering broken ribs in fall that went unnoticed (dailyrecord.co.uk)
- Nursing staff testimony differs with earlier statements on death of patient (jsonline.com)
- Involvement is first step to help prevent elderly abuse (hamptonroads.com)
- Behavior Management in Dementia Patients (olderadults.wordpress.com)
- Medicare paid $5.1B for poor nursing home care (utsandiego.com)
- A wife’s awesome devotion to a husband with dementia. And an agonising dilemma that’ll strike a chord with so many (dailymail.co.uk)
The facts are simple. I know more at times than staff. I have 23 years of care giving experience. I have schooling for Pharmacy Technician. Experience in working in the pharmacy. CNA training plus five years of Hospice work experience. I can give shots. I can use an aspirator. I can take all vitals. I can give temperatures orally and rectal.
I can bathe you in a tub or in your bed. I can wash your hair and never get your clothes wet if you are laying on a bed. I can do a complete bed change without you ever having to rise off the bed. I can help you transfer to the commode or I can get your butt all nice and clean from a dirty brief.
I can soothe your soul by brushing your hair. Promising you I won’t leave you alone. I can sing your favorite songs while you are going home to be with the Lord. I can wipe your brow and wipe your tears. I will hold you while you look into the bright light.
I will fix your meal and if need be I will gently spoon feed you. If you are on a Tube Feeder, I will make sure it is clean, refilled and flushed. I can push you in a wheel chair or hold onto you while you use your independence walking with your walker.
For all of this experience and love and comfort I bring to you, I am not a nurse nor a doctor.
I called into the facility a few minutes ago to let them know I would be picking up Al tomorrow at 1pm after his lunch. I explained I will not be bringing him back until after the supper hour.
I have cleaned and scrubbed and have the house as germ free as possible for your arrival tomorrow my brother. I have filled an Easter Basket full of your favorite goodies. I am now tired and the thought of picking up that forty pound wheel chair tomorrow makes me more tired.
When I asked how Al was doing they said alright. She told me, “We are going in twice every 8 hours to check on him. We ask if he is in pain, and we tell him to put his light on if he needs us.”
One of my blogger friends suggested I ask for a transport chair to bring him home and take him back, so I thought I would ask while I have her on the phone. She asked,” What’s that?”
The reason I gave you all of my experience is to not brag or boast. I don’t do that. I wanted to prove a point that not always do you need a license in your hand to know two things. Number one is, What is a transport chair? With your license behind you do you really not know what that is? Number 2, how many times have I said over and over that Al doesn’t use a call light? Not because he refuses, but because he has already forgotten what I taught him two days ago.
If and when Al gets to come home I am going to ask Medicare to help us to get a Transport Chair. It will be much easier for me to transport him and not take up so much room in the car. Believe me, if I could afford it, we would have a SUV or something like it as the regular wheelchair barely squeezes in the trunk even with the seats laying down.
- What Does a Pharmacy Technician Do? (theblondepharmacist.com)
- Choosing A Wheelchair Van For The First Time (jury1salad.wordpress.com)
- Popular Pharmacy technician programs (ash-campaign.org)
- This week I wrote about a disabled women that was taken away her electric wheel chair (livingforum.wordpress.com)
- Local Health Care Group Looking To Hire 150 New Employees (losangeles.cbslocal.com)
- Tomorrow is Easter! (revivalforce.wordpress.com)
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- How To Move The Pharmacy Technician Certification Examination (shawnmorales.typepad.com)
- Waiting for Easter (ljubljanadotanddotme.wordpress.com)
- The True Meaning of Easter (halcyonsoulcenter.wordpress.com)
This morning I awoke to no snow. I saw blue skies with a touch of pink in the horizons. A good sign of a nice day. It is to be 45 degrees today, a real taste of Spring.
I already have had my shower and my first cup of coffee. I had to get up early today. In about an hour or so I have to go pick-up Al. The transportation driver had too many appointments so I said I would pick him up. He has an appointment with the neurologist.
He hasn’t seen Al for about six months. He is still Al’s doctor, but doesn’t stay actively involved any longer. All medications have been tried for Parkinson’s Disease. For some reason they never worked for Al. Instead he would have terrible tremors and drool like a kid in a candy store.
He has fought this disease with no help from PD drugs. He has remained on pain pills to try to lessen the symptoms. He and I are still waiting for word to see if he gets to come home and go to Day Program.
It would be so good for him to regularly associate with men and women his age and with disabilities like his. For this I would be grateful. The spirit of the mind plays a big part of an illness I believe. I received a call last evening stating the facility now has Nitrogen for Al. They will use this for pains for his Angina. This could save his life if he is actually having heart problems and help steady his body until he reaches the ER.
I didn’t tell Al that I plan to take him out to lunch after the appointment. I will let him choose where he goes but I bet he says his favorite little place. Today we shall take his wheelchair. With having to walk from the facility to the car and into the doctor’s office and back out and lunch, I don’t think he will make it.
I had questioned him yesterday when I saw him. I asked if he wanted to use his walker or wheelchair and he requested the wheelchair. He told me he can’t walk that far without accumulating more pain. I figured this but I wanted him to have the choice to choose.
So today hopefully it will be a nice day for him and I. Sun, a little warmer a doctor who makes a lot of jokes during our visits and lunch out. Al will probably be worn out and take a nice nap when I return him.
- Thoughts (pbriselli.wordpress.com)
- Enhanced Functional Connectivity between Putamen and Supplementary Motor Area in Parkinson’s Disease Patients (plosone.org)
- Thinking Through the Less Obvious PD Symptoms (healthcarewriting.net)
- New Treatments Emerging for Parkinson’s Disease (voanews.com)
- Scientists identify ‘clean-up’ snafu that kills brain cells in Parkinson’s disease (medicalxpress.com)
- ParenteauFaust220 (wikicancel.org)
- ** Parkinsons Disease Best-selling Book On The Internet (foundonline414.wordpress.com)
- Getting the Medications that Are Right for Your Type of Parkinson’s Disease (healthcarewriting.net)