Cancer Survivor Sunday

This blog is about survival.  It lets me vent my daily stories and frustrations. Hopefully my stories inspire others in similar situations. 
This Sunday is Cancer Survivor Awareness. With that in mind I am also sharing the story in video of someones survival of this horrible disease, how they coped, and how it affected their lives and their family's life.
Cancer comes in so many forms, with so many names,  affecting so many lives.  Here is a link to an inspiring, hope filled video of one mesothelioma survivor.  May the video give you hope that you too can get through this.  Thanks to her husband for sharing this with me .  

Leonardo daVinci Painted with lead paint

I am confused. On the History channel last night I watched a program about Leonardo daVinci and his secret messages in his paintings 

At one point they showed a painting started by another person that Leonardo completed. Leonardo added an angel to the painting, using paint different than the original painter.  The program questioned why Leonardo would have used a different paint.

Leonardo used a lead based paint to paint the angel.  The original painter had used some other kind of paint.  When they did an X-ray of the picture that is done to see what is hidden behind the paint, Leonardo’s angel disappears.   

My question, my confusion, is because I understand that lead blocks or absorbs X-rays.  How does the X-ray see behind the lead paint to the scene behind the angel? Why does it disappear?  Am I missing something?  I would think the lead would keep the X-ray from seeing behind the angel. 

Can anyone answer my question?

Mechanical Lift to move a patient

We have a Hoyer manual lift 6 years, since 2006. It is rented from a medical supply house through Medicare, and AARP picks up the difference. At the time we received it Husband was recently out of the hospital from dehydration.  He was very weak.  I used it a few times in those 6 years, but it was more for a secure feeling knowing I could move him if I needed to with no one else to help.

In 6 years I have used it to get him off the floor a few times as I have told in other blogs. I started using it regularly about 3 months ago to put him into bed.  I had been transferring him using the gait belt, but his legs were no longer able to bear weight and a few times we both nearly wound up on the floor. Using it those few times in the past was good practice for now when I really need it every day.

In the last few weeks I use this lift to get him out of bed and into the wheelchair for breakfast at the dining table. I use the Skid Seat to pull him back into the wheelchair. Then from the wheelchair into the recliner where I then use the Bed Sled to pull him into position in the recliner. This is why I make these products, I use them myself.

Later in the day I use the lift to get him out of the recliner to the toilet, with a side trip to the bedroom to remove his brief and loosen his pants. Back into the lift and to the toilet where we maneuver the lift around the toilet getting him positioned over the seat and lowered into position. Our bathroom is not large and there are grab bars installed wherever they were needed. (The bars serve little purpose now). To remove the sling and get him released from the lift means climbing into the bathtub.

Tight Bathroom

Once lowered onto the seat Husband uses the the horizontal bars on the lift to hold himself forward and keep from leaning.  The legs of the lift reach the wall behind the toilet keeping it from moving back any further and makes it pretty stable for him to hold on to.
While he holds onto the bars I am able to assist him and hook up the sling again when finished and ready to get up. Then back to the bed to put on a fresh brief and his pants.  Depending on the time of day he may return to the recliner or sit in the wheelchair waiting for bedtime.
I am so glad this lift is here.

This blog offers 2 suggestions:

1. 1. Have a lift in house BEFORE you need it if possible. This will give you time to get comfortable with its operation. The few times you use it before conditions worsen will get you familiar with its limits for working room, how tight a space you can work in.
2. When using the lift on bare legs, like after using the toilet when pants have been removed, place cloth ( a washcloth will do) under the patient's legs where the sling will be wrapped to prevent the sling from irritating and cutting the skin. I try to keep Husbands pants on his lower legs while on the toilet. Then I pull them up over his thighs enough to allow the sling to go under the cloth.  It is clumsy but more comfortable than having the sling in contact with the skin.

How I got into “this mess”(his words)

June 23, 2012...He is groggy this morning, looking like he could fall back to sleep at the table. He is feeding himself his banana, but needing help with the oatmeal. 

Between spoons of oatmeal he asked me" how did I get into this mess”, spreading his hands over the dining room table.  I was not sure what he meant, still not sure I do.  I asked him to explain.  He said about the house, and all the hassle, was it all worth it.  He did not say specifically his condition. He asked if I own the house. I told him yes.  So I am not sure he knows who I am or where he is.   He finished his oatmeal, and his eggs and bun and juice. He took to his woodworking magazines and seemed absorbed so I went to the computer.

He is still subdued, drowsy. Maybe he will sleep at the table for awhile.  He does that sometimes for a few minutes, sometimes for hours. I have been sitting in my office  for a while now and he has not called me. So he is probably sleeping. I will check on him in a few minutes.  

I have mixed feelings when he sleeps.  I get some “free” time but I cannot go anywhere. I cannot do anything that will disturb his sleep. I can’t get involved in something that requires a commitment of my time and attention because if he wakes and calls me I must drop what I am doing.    

It's time to check on him and maybe go see if there is any mail.  It's a beautiful day, not too hot or humid.  Maybe we'll go grocery shopping later.

Getting Out of Bed is More Difficult

My helpers are here Monday through Friday, so Saturday and Sunday I am on my own.

This being Saturday, I had no help to get husband out of bed.  He wanted to get out of be right away, not waiting for his pills to kick in. The last few days I have needed help to get him up and into his wheelchair. This morning I am on my own.  

This morning he seemed strong enough to help himself a little.  I use his ability to grasp and hold his assisting bars to determine how much strength he has. I got him sitting on the edge of the bed holding onto his support bars.  From this position, on days when he is able, I shift his body sideways onto his wheelchair and  he uses his legs to raise  himself to clear the side arm of the wheelchair. I tried to get him to his chair like I normally do when he has some strength to stand.  I got his tail bone to the chair with him still hanging on to his bars.  I could not get him to stand nor could I leave him alone at the front of the chair while I went around back to try t pull him in. So I tried to push with my knees against his, but he was not able to hold himself up any longer and started to slide to the floor.  I told him to let himself down easy as I pulled the wheelchair out and away from him.  When his tail was on the floor I pulled the chair out the rest of the way and lowered his head to the floor onto a pillow.  

Fortunately I have had to get him off the floor on a few occasions so I knew how to use the Hoyer lift ( a mechanical lifting device) to get him up. I got the sling under him and jacked him up. I jacked him high enough to get his wheelchair under him and lowered him into the chair. We went the dining room table for breakfast.  His pills kicked in about 30 minutes after he was into his wheelchair.  Some days it can take an hour or more for the pills to start working. And sometimes they don’t seem to work at all.   He has been taking these same pills for 14 years. We were told in the beginning that the pills will lose their effectiveness after about 8 years.  So I guess we’re lucky they still work for him.  When they work.

corner filed off so Hoyer can get in

I have been wondering how soon I would be needing the Hoyer to get him out of bed.  I guess it’s pretty soon. I have been using the Hoyer to put him to bed for about a year. And the last 2 weeks I am using it to get him onto the toilet during the day then back into a wheelchair for the remaining hours until bed. Maneuvering in our tight bathroom is the hardest part.  I recently sanded off the corner of the sink cabinet to allow the wheels of the Hoyer to get in alongside the toilet. It helps but it’s still tight. 

He’s reading now. I have the air conditioner on. The cats are running around because it is cool enough to be active. (when it’s too warm they sleep)  I hope he doesn’t decide to go to the shop to do wood working.  Although I might be a good change for me to work at something other than sewing or getting votes for the grant.

Mission:Small Business Grant from Chase, our entry

Will you vote for me?

Today I spent 90% of my time on the telephone gathering e mail addresses so I could send the link for voting for Caregivers Aide for the $250,000 grant sponsored by Chase Bank. I have the grant application completed and in review by my SBA contact before I actually hit the SUBMIT button.

The terms of the grant state that applicants must receive 250 votes on the Mission: Small Business voting site by June 30, 2012. Voting requires logging into a Facebook account. So not just ANYONE can vote, only FB members. If the applicant does not have the 250 votes, their application will not even be considered. So, considering the amount I may win, the hours spent gathering votes  is well worth the effort. 

My main business, besides caring for my husband, is seamstress. I have been sewing my whole life but hung out my shingle, that is advertised my business, in 1999 when I came home to be with my husband.  While I was still working as a bookkeeper at my last job I would repair and alter clothing for my coworkers during my lunch hour.  This was when I realized the potential of using my skills. 

When I started sewing at home in 1999 I started a log book of names, phone numbers and descriptions of the work to be done so I would know what work was still to be done and just what I had to do.  I have 10+ years of logs.  I never thought much about those logs other than their intended use to contact the clothing’s owner when the job was ready to be picked up.   Today I dug out the books from the last couple years and called all my old customers asking if they use Facebook and if so, would they vote for me. 

I started getting hoarse around 4 pm , but what a gratifying day. I called about 100 people, spoke with most, left messages with others.  I received 41 email addresses I will use to send voting information.  The others either have no computer, or do not use Facebook.  This does not surprise me.  A lot of my customers are retired and do not need a computer.  And Facebook is a lot more complicated than it seems.  Some of these customers I have not seen or spoke to since I performed their sewing several years ago. But when I told them who I was and why I was calling they were anxious to help.  And some who did not have computers gave me names of their friends who do use Facebook, friends they would ask to vote for me.   

Brendon Burchard, a motivation and high performance trainer, lists three considerations for living a satisfying, productive life: Have I lived? Have I loved? And have I made a difference in the world, did I matter?    While I am not, never have been the fireball of energy he seems to be, I do believe I can answer all his questions with a satisfying Yes.  Today’s response to my phone calls to customers that in some cases I met only once a few years ago makes it all worthwhile.  I’ll never get financially rich from my sewing business (hence trying to start up this second business that requires a grant) but I’m sure having fun and making some great friends. 

Please vote for Caregivers Aide to help us qualify for the grant - please follow the link below:

The terms of the grant are that I must receive 250 votes on their voting site by June 30 before they will even look at my application.  To vote you will need to log into a Facebook account.

I will use the grant to purchase materials, labor, and machinery needed to go forward with a distributor that has expressed interest in my products, and all the required packaging etc.

Here is the link.         https://www.missionsmallbusiness.com/          

Go to “Log in & Support”

When you get to the voting site you will need to scroll down and type in the company name:     

Caregivers Aide, LLC        Pennsylvania                    Auburn                  

and hit SEARCH.  If you have entered the information correctly it will give you my full address and how many have voted. On the lower right there will be a VOTE button.  Click that button and you are done.  You can then share this with other Facebook users, or just forward this email to anyone you think might vote for me.

I value and appreciate all your efforts on my behalf.  And please ask your friends, family and co-workers to vote too.  The more votes the better.

Thank you.

Pets Need Caregivers continued

Pets need Caregivers too - continued

In September 2011 Tippy wanted to “live“in our van.  We had a dog years ago that did the same thing near his death.  He wanted to live in the van we had at that time.  Now when Tippy wanted the same thing I knew it was not a good sign. In the cold months of November, December, and January  I had an electric space heater hooked up to an outlet in the garage with a long extension cord so she would not be cold in the van. Some mornings it was 20 degrees!  I would start the van, turn on the van's heater, and plug in the electric heater at 6 am so it would be warmer when she came out around 8 am. I put a doggie rain coat on her to help keep her warm and the belly bandages covered her groin.

 I had bed pads on the floor of the van. I fed her during the day in the van.  I could lift her butt to help her in but could not lift her down.   I had to use the wheelchair lift to get her down from the van. I used a Bed Sled to move her around inside the van.  Tippy came back into the house every day around 4 pm. 

Life was difficult for Tippy and time draining for me, but I loved her so much.

The last Saturday Tippy was with me, when it was time for her to come into the house, I used the Bed Sled to pull her over to the door of the van and onto the wheelchair lift.  I got her down to the ground and slid her off the lift.  She was still not able to get up.  I could not lift or carry her. I stood in the street in front of my house and flagged down a couple neighbors to help me get her into the house.

They carried her on the Bed Sled onto the wheelchair elevator so I could get her upstairs. I dragged her off the elevator into the house and left her lay.  Awhile later she got up and went into the living room to lie on the bed pad there.  That was where she stayed most of the night.  She was able to get up and walk to the wheelchair elevator twice during the night to urinate in the yard.  But she had such a hard time of it.  She collapsed on the sidewalk coming back to the house.  I was able to help her up but could not carry her. She managed to walk back onto the elevator and we went back into the house. 

She was the same the next day.  She wanted to go back to the van but I could not count on having neighbors handy to move her again so made her stay in the house. 

That night, Sunday, I emailed the vet telling him her condition and requested he put her to sleep the next morning.  I requested he do the job in the van so she would not get excited or anxious.  She always barked and made an excited fuss when we went to the vet.  Now I did not want to make it more difficult for her. 

The vet and his assistant were wonderful.  They climbed into the van with Tippy, checked her over and administered the drug to calm her down.  This alone nearly put her down.  Then they administered the final drug and within minutes she was gone.  So peaceful.  I think Tippy stayed on with me as long as she could.  But she was tired and ready to go.

She is now buried in our yard alongside Tobie, her brother who died 2 years ago from another disease.  I picture them playing together again with no pain of arthritis or hip dysplasia. I miss her and Tobie.

The 4 kittens I wrote about last year are still here.  The Lord works in ways we cannot imagine.  Now that Tippy is gone, the cats (they are no longer kittens) fill the void.  Don asks “where’s the cats?” now, instead of “Where’s Tippy?”

Pets need caregivers too

Tippy Part 1

We buried Tippy Toes, our black lab, Jan 31.

Tippy had tumors most of her life but they were fatty tumors, not painful and of no danger to her. Then she developed a tumor on her lower abdomen that was cancerous.  It appeared literally “suddenly”.  She had been for her check up and was fine. Two days later I found this growth and thought she had bit herself too hard chasing fleas. I watched it for a week and it did not go down in size. I went back to the vet. They aspirated it (drew fluid) and found it was a mast cell tumor. 

This new tumor did not seem to bother her. The vet said it could be removed but with her age she may not survive the anesthesia.   She was 13 years old. We took her home and tried to keep her comfortable.  The vet explained this kind of tumor would fill up and drain, and fill up again.  He said it was full of histamine. Like what we get when we have sinus trouble.  We take anti-histamines. 

Over the next couple months this tumor began to drain.  I made a belly wrap for her with changeable bandages, made from the cut offs from the bed pads we make.  The bandage had Velcro to attach it to the wrap that went over her back and held it in place over her belly.  It looked like a life vest for dogs.  At first I changed it once a day.  A month later it was twice a day.  Since they were bed pad material they were washable.  I did not put them into the wash machine, although I could have.  I did not want to have any residue from the bandages in our clothing. So every day I was hand washing these bandages.  By the fifth month I was changing the pads three times a day.  It drained so much I think she was dehydrating simply because of losing so much fluid.   The last couple weeks she would not eat, and drank very little.  Chicken in broth with mashed potatoes had been a favorite but she had no interest now.  She lived on a few milk bones for a couple days, and then did not want them either.  She was still alert and tried to get around as best she could.

Tippy had hip dysplasia since birth. So she always had trouble getting around. From age 6 months I gave her Glyco-flex for dogs, like the glucosamine that people take.  It made a huge difference in her ability to move around. Now at 13 she had arthritis to deal with too.

With all this, she never eliminated in the house.  Even in her last days.  When she did have to go, she managed to get herself up and walk to the door.  For the last month I let her use my husband’s wheelchair elevator to get out the house without having to do the stairs.  I had bed pads down on the carpet in her favorite places to catch the fluid that leaked passed the bandages and to catch any accidents.

Memorial Weekend and kitties have a cold

It's Friday before the Memorial Day Holiday.  My girls are gone to their homes and families.  The girls are the CNA and the sewing assistant.
Don worked on the hickory wood project today. He was able to use the palm sander to prepare some of the parts for the next step.
All week long he has been very quiet and subdued, not doing much of anything. I was actually able to get something done in the sewing room this week because he was not in his shop requiring my attention.  The girls can't help him with machinery, that's not in their job description. And God forbid they get hurt. So they always have to come get me when he wants something,  Also they can't understand his sign language, pointing to something, describing something with vague hand movements.  Fortunately I know the tools in his shop, and like a surgeon's assistant can know just by what he is doing what tool he will need. Strange comparison I guess but you get the idea.
The cats are starting to sniffle.  BB started it with sniffles and is now bringing up his food. I just called the vet and made an appointment for Tuesday if they are not better.  If one gets it they will all have it soon.
Also got the grass cut this afternoon after I finished altering blouses for a customer. The grass is starting to grow faster than I can manage. That' the down side to summer.
Next week will be busy.  We'll see how it plays out.  Have a good weekend.

Move A Patient in Bed - How does the spouse sleep?

This may seem like a weird story but it’s true.  My husband with his Parkinson’s disease is not able to turn or move himself in bed.  (This lead to the creation of the Bed Sled).  But that’s another story. 

First I need to explain that we sleep together in a queen size bed. In the beginning of his diagnosis he was not able to settle to sleep unless I was cradling him.  After his drug dosages were worked out, his need for my touch subsided somewhat. But not completely. 

He will still during the night reach out to make sure I am in bed, that I have not left him alone.  It’s hard to sleep with this “touching” disturbance.   It’s nice to be needed but I need my sleep.   For the past couple years when he rolls in bed, because he does not have control of his arms or legs movement I was often times getting kicked or punched while trying to sleep. I found myself moving away from him and closer to the edge of the bed, sometimes hanging on “with my toenails”. 

When he would call during the night to roll him, I got out of bed, went around to his side and took hold of the Bed Sled pulling and rolling him in the direction he wanted to go. I would often not be able to fall back to sleep for a considerable time, if at all.

One night I tried laying a foam mattress on the floor alongside the bed. But with my bad knees it was difficult getting off the floor to answer his calls. So I was back in the bed.  Then I tried putting a clothes hamper up against the bed on my side, so if I rolled I had something to catch me. It helped but was very uncomfortable.

Also our dogs, Tippy and her brother Tobie, slept in the bedroom with us. So whatever I did I had to make sure I would not trip on the dogs when getting to him in the dark.  Now that both dogs are gone, and the cats sleep in the powder room, I can have a clear path on the floor.  So I moved my cedar chest up against my side of the bed, piled some extra bed pillows on top to bring it up level with the bed and am now sleeping on this “bed extension”.  Works pretty good actually.  I am able to sleep without falling out.  And when he wants to roll I don’t have to get out of bed most times.  I reach over and roll him without getting up from bed.  Occasionally I have to get out of bed to perform the roll, but most times not.  It’s not the easiest thing for me to get into bed now, but once I lay down its pretty comfortable.

Now when he rolls it is like a log roll, literally from one side of the bed to the other.  I don’t need to pull him over to make room for me.  I just make sure I get him into bed far enough when he is transferred into bed. So when I roll him towards his side of the bed later during the night he will not roll out. I still find him looking at me to make sure I am still in bed with him, because I am lying just outside his reach (unless he really stretches).  But now I can sleep better.  And to think I considered getting rid of the cedar chest because we don’t keep woolens anymore!

The point of this story is that nothing is stupid if it works!

Update May 2012

This past month has been scary.  Don has been quiet, polite, subdued.  But drooling has been really bad for nearly week.  Swallowing is very difficult.  Choking not an issue because the food does not get that far.

Friday morning he had his normal oatmeal, banana, juice, eggs, and bun. He could not eat his lunch or dinner. Saturday he ate 2 small pancakes and a little juice.  He normally would eat 4 large pancakes, a banana, and juice.   Again he could not eat or drink his lunch.

After lunch that he did not eat, we went shopping to purchase more patches for the tissue box holders.  He sat quietly the whole trip.  He did not want anything to drink.  I’ve been concerned about dehydration and now I was starting to really worry.  In the past two days I don’t think he drank 8 ounces of liquid.  But he was still losing all that fluid in his drool.    I know this has been playing on my nerves and my conscience… was I the cause – neglecting or missing something?

I have been giving him additional Ropinerole or Carbidopa/Levadopa a half hour before dinner hoping it takes effect before I serve the meal and he will be able to eat.  Lately that plan has not been working. Considering his state I decided to give him a larger dose, it could not/would not do any harm.  It took 45 minutes but finally it took hold.  He wriggled and danced in his wheelchair which I know he hates, but it signals the drug is working.  I got him to eat… and boy did he eat!  4 large eggs, sausage, potatoes, 3 pieces of cake, left over pie, soda, juice.  Made up for not eating all day, and part of day before. 

I guess we are back to a larger dose again until he gets maxed out with hallucinations, irritation, demands, confusion.  Might be only a few days, maybe a week and I’ll be cutting him back again.  At least I get a momentary reprieve from worry about dehydration. 

The Kittens

8 weeks ago I rescued 4 kittens from under my back deck. I caught the mother but she got away when transferring her to a larger cage that would allow me to put her kittens in with her. A day later I caught Papa. Papa has been around here for a couple years, having his yearly fling under the shed out back. Last year I had help to catch the kittens from that litter. This year I was on my own.

I took Papa to a pet clinic that neuters strays for a reasonable cost, had him neutered and released him the next day. I hoped he would not hate me. I have seen him around since so I guess its okay as long as I keep feeding him.

Momma I haven’t seen in a while. I hope she’s not off giving birth again.

I thought I could catch these kittens and find a place to take them the same day so it would be quick and easy. Uh uh. The kittens, I found out, were too young to be neutered. They must be 5-6 months old; these guys were only 8 weeks old. I know their age because I discovered them under the deck with Momma probably the day they were born. After my discovery Momma moved the entire litter to a new location, probably under the shed where previous litters were raised.

So I became a kitten custodian, raising these kittens until they are old enough to be adopted. I could have taken them to the SPCA, but there was no room. They all had a respiratory infection requiring a trip to the vet and medications, also worming.

Fortunately I have a small bathroom off the master bedroom that I am able to use as “the cat room”. It needs a paint job anyway. They haven’t destroyed it as such, but they have definitely left their mark.

I did not intend to but found myself wondering if I could keep all four cats. Besides the cost of food, litter and vet bills, I wasn’t sure how I could handle them and care for my husband. I lay awake nights trying to figure a way to cat proof my house, so they would not get outside when I opened the door to get husband in his wheelchair outside. A perfect escape opportunity for curious cats.

Husband said we should keep them and seemed to enjoy watching them play when I let them out of their room at feeding time to stretch their legs. His attitude changed when I had to pay them increased attention, cleaning litter boxes, socializing them, giving them medications. He no longer wants to watch the kittens, but sits in the living room watching the TV while I feed and exercise the cats.

There is a tiny female in the liter I named Tina. She is an independent spirit but very loving if you can catch her. She comes out with the others to play but does not go back in to feed as the other do, leaving me to try to catch her. I cannot leave her outside the cat room while I go about taking care of other chores, so must spend time in frustration trying to catch her. I have found a newly opened can of cat food helps. But it is annoying and time consuming. This one antic is my biggest drawback to keeping any or all the cats. Tina is mostly white but with a lot of calico patches blending over her back, rump and tail. Fur is like rabbit fur, so soft.

Of the others,

Fluff, the only long hair in the group, is a sweetheart. Under his billowy fur he is very tiny, smaller even than Tina. Very affectionate. Coming along standing up to BB and the others. Uses the cat tree to sharpen claws and chase BB. Mostly white with orange tabby marks on his face, back and tail, small orange smudge on muzzle, just like Papa. Although Papa has short hair.

Essy, short for S.C. (sick cat), had such a bad respiratory infection she could not smell her food and would not eat. She is healthy now but is still coming around to being affectionate. If I catch her and hold her, she will purr but doesn’t sit still long for being held. 80% white with calico marks on head, rump and tail, fur is smooth and sleek.

And BB, the sweat heart of the bunch, larger than the others by a couple pounds, white with black patches. BB stands for Big Boy, Bad Boy, Big Belly, Butter Ball, and Baby. I shortened it to BB like BB King the musician. Affectionate from day one, his fur is like velvet. Eats like a little pig, pushing his siblings away from their food so he can eat it. I stand guard over the food dishes to be sure everyone gets their share. BB is most active on the cat tree, scratching to sharpen claws, climbing up to the platform and performing cat antics. He sits on the platform over seeing his siblings’ antics and may decide to join in. He is the one I might keep.

All the kittens are being taken to be spayed or neutered next week, then they go to a Pet store to find new owners. I will cry my heart out, but I don’t know how even one cat will fit in when husband’s demands take precedent over everything else. Also I’m afraid BB will jump up on the bed while husband is sleeping or resting and hurt husband with cat scratches, not intentionally, but it would make husband less willing to have cat.

Also must mention our dog Tippy Toes, a 13 year old black lab, who just lies still while the kittens sniff and walk around her. BB has been nose to nose with Tippy, the others are still not sure. Tippy has hip dysplasia and is arthritic. She can’t do steps without assistance. She won’t be with us a whole lot longer. Her brother died two years ago and is buried up on the hill.

I don’t know if I should push to keep BB or if all this is just too much and I should just let them all go until there are fewer demands on my time.

Also have to consider cat fur getting onto my medical device products. My workroom does not have to be sterile but the product must be clean. If a patient would be allergic to cats and my product has a trace of cat hair, it could cause a problem. Don’t need that.

It’s amazing how much he can change from day to day, even hour to hour.
You can tell markedly, when his medication wears off, even though his condition is such that you would swear it was not working, if that makes any sense. That’s where the worse becomes worser.
These past couple weeks, he has been so very weak. Eating less. Drinking less. Waking during the night wanting cold water.
Mornings are best, after I get him washed up and dressed from bed. I give him his medications before he gets out of bed so they have time to start working before he gets to the table. I can tell pretty well by how much assistance he needs to get out of bed, how the day will go. Lately, he needs a lot of assistance. I sometimes have to call the daytime assistant to help get his wheelchair under him because I can’t let go of him long enough to do it myself. If he is strong enough, I am able to support him myself while I reach for the wheelchair.
Depending on his condition he may need to be fed. On good days he will feed himself. Yesterday started off pretty well, he fed himself at breakfast. Later, he wanted to putty the floor in the sun room. He was too interested, too determined. He tried to do it from the wheelchair which I knew would not work.
I helped him down onto the floor onto foam pad. After the episode of getting him off the floor using the pneumatic lift (see previous post) he was quiet the rest of the afternoon. At dinner he could not stop yawning and soon fell asleep half way though his meal. This has happened before but usually he can hold out until later in the meal. He woke about an hour later and we watched TV until it was time for me to feed the kittens about 8 pm. (See other blog story)
We went back to feed/watch the kittens and he indicated he wanted to go to bed. I got the kittens back into “their room”, my bathroom off the bedroom, and got him into bed. Not without difficulty. He let me use the pneumatic lift to get him off the floor, but won’t let me to use it to get him into bed. My back tells the story more times than I can count.
He fell asleep immediately. Slept soundly until 3 am when he called out for cold water. Then his legs starting jumping and he wanted medication. I don’t normally give him meds at this hour, but I did and adjusted his dose at breakfast. Afterwards, he was restless in bed, wanted to get up. I got annoyed telling him its only 3 am. He got angry and said he can’t help it (which made me feel guilty for being annoyed).
I got him up and dressed not knowing how long he would be up. We went to the table. He had a sweet roll and tea. Considering he ate only ½ of his dinner, this did not surprise me. What was unusual was his getting up at this hour. He was back to bed by 4:30 am. Years ago when his disease was diagnosed and we were trying to get his medications figured out, this was an every night event. I hope this is not an indication that those late night wake up calls are coming back.

On the floor? He's trying!

These past couple weeks have been difficult…in many ways. Husband’s condition has been worse, varying from worse to worser. Some days he is nearly a zombie, no speech, little movement, and little interest in surroundings. Getting to the toilet or bed from the wheelchair requiring a gait belt transfer with much difficulty. Other days like yesterday start off fairly well.
We are (I am) finishing a “sun room” addition added on last spring to accommodate an elevator wheelchair lift. The lift was installed this past April and is used every day, sometimes two or three times a day. He has not been able to use the stair glide for nearly a year. We waited more than 6 months for this elevator because we used assistance from our County Area Agency on Aging. The construction was put on hold until the elevator was installed so the contractor would know where to install the entry door. The room is now able to be finished inside, paint, trim, flooring, etc.
I know a little about working wood from building fancy doll houses years ago, so I was able to put up the window, door, and baseboard molding. Some of it was tricky because the addition was made to fit under the front porch roof so there is not a standard room height or door height. Everything is shorter 6-12”. Anyway, the trim came out looking pretty good. The painting is now complete.
The vinyl flooring is next. The unfinished plywood floor is nailed or screwed to the support joists. The edges of the plywood are not level to each other and there are dimples or holes from the screw holes that will show through the vinyl. These need to be filled so the vinyl will lay flat. This part of the project was put off until the walls and trims were painted.
Husband wants to help - Husband insisted he would do this part of the project, using wood putty and a putty knife. It meant he would have to bend over while sitting in his wheelchair to reach the floor to apply this putty. He could not reach the floor. He wanted to get onto the floor so he could do it. No matter what I said I could not convince him he could not do this.
Getting him off the floor…If anyone had seen him they would have asked if he fell. No, I put him down on the floor, dropping him onto his knees onto a foam cushion. He insisted he could do this. I knew better. He landed on his knees, sort of. Then slid onto his side and lay straddling the cushion. I went to get a pillow for his head. I got him into a reclining position, which, because of the small size of this room, could not have been too comfortable.
He wanted to sit up…impossible. He could not stand to get out of bed without assistance; no way could he sit unsupported on the floor, legs out straight. If we did not have the pneumatic sling lift I would not have given in so easily. I’ve used it before for the same purpose, getting him off the floor when he would not hear otherwise.
I told him to lay there for a while to get his breath and gather his strength to get up. He lay for about 2 hours watching me while I continued to work around him on the sun room. Finally he wanted to get up.
Rolling him from side to side, I was able to get the sling under him and get him lifted enough to get him away from the walls. Fortunately this room was made to be ADA compliant for size so I was able to maneuver the lift so that I could get his wheelchair under him again. I should mention husband weighs about 110 lbs.
Once in his wheelchair he sat and watched as I got down on my butt on top of a cushion and scooted myself across the floor to fill the holes. It took about an hour to fill the gaps and holes, moving his wheelchair from one side of the room to the other as I moved across the floor.
Comical? I thought of taking a picture of him on the floor to show him and his daughter later. I did not. I don’t think he would not have seen the humor in it. I give him credit for trying!

Blog 9/30/2010

Husband had a choking incident. Scared the devil out of me. He was choking on a tuna sandwich. The CNA called the EMTs while I worked on my husband to free the item lodged in his throat. He was able to bring up the piece of bread that had been stuck, but it was the worse “close call” so far. The EMTs arrived and checked him over. Husband has now decided to pay more attention to his eating and chewing (with the couple teeth he has left), to avoid choking again.
It’s been said that Parkinson’s won’t kill you, but the conditions it causes can do you in. I think when my husband’s time comes he will choke to death. Not a pleasant thought. When his Carbidopa/ Levadopa (hereafter called “C”) wears off, his muscle control slows making it hard for him to swallow and to speak.
Sometimes he gets to fussing over taking his pills as he did in 2006 when he wound up in the hospital. I have to explain and remind him the consequences of not taking his “C” meds. He hates the pills and the dyskinesias (wiggles) it produces. I don’t like giving him this pill because I know what it does to him. But without it he can’t move.
The wiggles start 20-30 minutes after taking the pill and can last 1 to 3 hours, slowly winding down. He was prescribed to take this pill 4 times a day. If I gave him the pill that frequently he would climb the walls. That’s not even considering the other side effect of hallucinations.
The “C” is crucial for him to be able to move. Being able to move his facial muscles helps him to chew, to swallow, and to speak. A short time after the “C” has taken effect he is able to speak very well and he will talk you under the table with stories of his earlier days camping or driving truck or fishing. But when the pill wears off, within 2-3 hours, it is nearly impossible to understand him. In frustration he will throw his hands in the air and scowl. And for the rest of the day he will try in vain to communicate, only to get angry with me or his CNA claiming we need hearing aids. If I convince him to take a little extra “C” to hold him over, within 20 minutes he is usually able to speak again. He gets the wiggles again and a short time later, maybe an hour, the benefit will have worn off. Nothing is predictable with this disease.

Patient aids -What you'll need and where to get it

The items listed here are for a patient with Parkinson's Disease at various stages. Being elderly is a consideration. If there are other conditions - diabetes, heart problems, your list may be considerably longer. Sometimes you just wish you could find something that will work. Look everywhere, expect suprises. Be flexible and open to new uses for old items.
You may purchase items you need from medical supply stores found on the internet or through the Yellow Pages of your phone book. Most people appreciate saving money where they can. Shopping yard sales, flea markets, or estate sales can lead you to used wheelchairs and other reusable supplies. I have purchased 3 used wheelchairs over time, in various condition- some paint chipped, missing a small part, or hardly used. Prices ranged from $15.00 to $40.00. One wheelchair stays in the car, one on the porch to get him to and from the car, and one in his basement workshop. Other items you might find helpful: fold down lap table, bedside tray table on wheels (like used in the hospital), toilet chair, tub chair, hand rails, eating utensils, bibs, bed pads, etc. If you are unable to get out to shop these "bargain hunter" sales, put the word out to friends or relatives to be on the watch for items.
When obtaining these items don't hesitate to get more than one, maybe several of each item, ...you'll need them. Plan to have multiples - keep one in the car, one in the house, one in the basement, etc.
It may seem cold hearted to take advantage of another's hard ship when they are selling off items their loved one used while they were being cared for at home. Most sellers are glad to see the items go to someone else that can use them.
Your county Department of Public Welfare may be able to assist if the patient qualifies. They may provide financial assistance to obtain new items such as wheelchairs and other mobility equipment - hand grab bars in the bathrooms, stair glide to get up and down stairs, even house remodeling to accommodate the handicapped patient, the idea being to keep the patient in his home as long as possible. They may also be able to provide caregiver assistance to help care for the patient. Having assistance when you need it can help prevent caregiver burnout and depression. The current economic situation may mean cuts in funds available for this use, but it wouldn't hurt to try to get their services.
Medicare may help pay for equipment if their requirements are met. Combining both Medicare and County Assistance can go a long way to making a difficult situation livable.
Remember to take care of the caregiver. It that's you, allow yourself time to breathe. I should talk. I feel guilty any time I feel the need to get away, so usually I don't. "My time" is while he sleeps late or goes to bed early. I can't go out and leave him alone, but I have time on the computer or to read, whatever I can do and still be within hearing distance of his call.

This is how his Parkinson's disease symptoms progressed in order of occurrence.

In 1998 he was diagnosed with Parkinson's Disease. First symptoms were shaking left leg, "pill rolling" with fingers.

1998-99-2000 he was still able to walk on his own without assistance.

2001, 02, 03 were adjustment years, getting used to the fact of needing assistance to walk and needing a wheelchair. When he was going through this period of adjusting to being dependent on wheelchair mobility, accepting and working with his new limitations, I was younger, somewhat stronger, and able to give more of my strength. As his strength waned, mine increased. I was discovering and inventing ways to care for him.

2004 I learned how to do a wheelchair transfer into and out of bed, etc. I learned how to lift transfer with a gait belt, and learned how to use the Hoyer lift. Using these safe patient handling methods I would not injure him or myself. He went for Physical Therapy which helped some but he would not "do the homework". Fortunately through County Senior Services Area Agency on Aging, I was able to get a CNA to come in to help me care for him five days a week. Having help made life a little easier and he enjoyed the new company.

2005 and 06, as his condition got worse, there were days he never got out of bed. Early 2006 we tried speech therapy. He could hardly talk and got angry that I could not understand him. He would not take his meds. All this came to a head in winter 2006 when he wound up in the hospital. That period of time while he was going downhill, getting weaker, losing muscle control, losing ability to communicate, was absolutely the worst.

2007 He recovers from the hospital stay and swears he will never be taken to the hospital again! He re-starts taking his medications. His progress in recovery in surprising. But he is still totally dependent on the wheelchair. Dec 4, 2007 I applied for a provisional patent of the Skid Seat repositioning device.

2008-09 He is generally better since taking his medications. Dealing with not knowing how mobile he will be each day takes its tole on both of us. Wants to do hobbies, angry not able to do so without assistance, getting into or out of the car sometimes a nightmare.

I'm considering using the Hoyer lift to get him into the car. Question is how do I get him out at our destination. Haul the Hoyer on the Scooter lift mounted on the back of the car? Needs more consideration. I've priced wheelchair accessible vans that would let us put him into the vehicle still seated on the wheelchair. Prices even used are way beyond our reach right now. So we get by with physically hoisting him bodily into the car with some assistance from him. Days he is not as mobile, we just don't go anywhere.


Time line:
1998 diagnosed in fall of 98

1999 walking

2000 walking

2001 walking being affected

2002 He needed wheelchair to get around house, restless legs all day and into night, some nights only 2-3 hours sleep

2003 June became eligible for Pa Dept of Public Welfare Senior Services PDA Bridge Waiver

2004 Physical therapy , received instruction in proper transfer methods, less walking, part time CNA assistance, home modifications, scooter. I had surgery in October and was not allowed to lift anything for several days, so was not able to assist my husband. The Waiver program provided the necessary CNAs for 24 hour care for him for 5 days.

2005 More therapy , less walking

2006 Speech therapy early 06, Dec 28 into hospital for dehydration for 5 days

2007 Feeding tube removed February, taking meds on schedule, great improvement

2008 March - Anti-depressant started, October we went trailer camping in the Poconos for 2 weeks, he was determined to go; confusion, hallucinations, slurred speech, coming and going (meds need frequent adjustment)

2009 Hallucinations occur frequently- I try to adjust meds. General weakness for longer periods of time. Cannot help lift himself for transfers.

He has ups and downs from day to day. He is taking his meds, not willingly - but taking them, and he's doing better. I learned some tricks during the tough times. Some I use every day , others are in memory for use later. In future articles I'll be sharing some of my tricks with you.


Please visit my web site www.caregiversaide.com to see my Patent Pending Skid Seat(R), my reusable bed pad and related items you may find useful in caring for your loved one. Thank you.

Parkinson's Care - The Disease, The Reality

Parkinson's Disease breaks down communication of the brain to the nerve endings that control movement. There is a more technical description, but that's the gist of it. Untreated Parkinson's can be like total paralysis. Even with Parkinson's care, the patient can have symptoms like freezing in place, or not being able to swallow or speak. Not every Parkinson's patient has the same symptoms. We have been to Parkinson's support groups where each participant had none, some, or little outward symptoms of this disease. My husband was often the only wheelchair patient.

My husband's Parkinson's Disease was diagnosed in 1998. For the first 4-5 years you would not know to look at him that he was anything but fit. Since then, as the disease progresses, his symptoms are moderate to severe, changing from day to day. In late 2006 he developed problems swallowing. He could not swallow water or applesauce and therefore could not swallow his pills. He could not swallow the pills that would allow him to swallow. It was a continuing downward spiral. I started looking at cemetery plots.

He wound up in the hospital for 5 days on intravenous fluids to rehydrate him. Once stabilized, they sent him home with a feeding tube installed because he still could not swallow food or water. His pills were administered through the feeding tube for a few days. Finally some of his muscle control returned and he was able to take his pills again. Soon he was able to swallow liquids and within 2 weeks he was eating solid food again. Not steak mind you, but hamburger or soft meats. His feeding tube was removed eight weeks later.

After that he began taking his Parkinson's care more seriously, taking his medications somewhat on schedule. He was able to get around much better, not walking but able to assist in moving himself. He always had a poor attitude about the disease. Depression was making him miserable. I finally spoke to his doctor about his depression and a low dosage of anti-depressant was prescribed. My husband HATES pills. It was hard enough time to get him to take the previously prescribed medications, how would I get him to take this new, additional pill?

Fortunately, or not, depending on the agenda for that day, husband was staying in bed longer in the AM. I started giving him his first Parkinson's illness medications around 6 am before he got out of bed so that if he slept in, he would not have missed his first dosage of meds. With this system in place I was able to "hide" this new pill with the others and he never found out. Still doesn't know. If he knew what it was for he would not take it. It has made a wonderful difference. He does not speak so often of doing himself in, he's much more pleasant, and he's more tolerant of taking his other pills throughout the rest of the day. He still has depressing days when mobility of any sort is nearly impossible, but we get through it.

He recently coined a new phrase "I have to carry my own casket", used when he does not receive the assistance he expects (and needs) but I am not physically able to offer him. He must participate in transferring himself from the bed to the wheelchair, from the wheelchair to the toilet, or to the stair glide, or to step out the front door to get onto his scooter. He only weighs about 145 lb. but I am not strong enough to lift him. Without his participation he is dead weight. At those times I agree with him, "Yes, you have to carry our own casket because you're too heavy for me to carry it alone. " The strength and patience come from somewhere because we do eventually get him moved.

Please visit my web site www.caregiversaide.com to see my Patent Pending Skid Seat(R)used to help reposition into a wheelchair, my Bed Sled, a reusable bed pad with handles, and related items you may find useful in caring for your loved one. Thank you.