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.