Palliative

I haven’t written in a long time, and so much is changing. My dad is now palliative. Which is a scary stage of his disease to us all. But it is also a good thing. I was frustrated with doctors who were more concerned with my dad becoming addicted to the pain killers that dealing with his ever-increasing pain. Now that the doctors have stated he is palliative they are only concerned with the quality of his remaining time and will control the pain.

I called a family meeting after we were told of this stage so that my siblings would hear the same information and we would have a chance to talk about how my dad wants to see this part of his life. It was only a meeting to start the discussion, not the only one we will have, but at least we are all coming together.

I love my dad very much and this last part of his life is hard to think about for me, for us all. He will always be the dark-haired, laughing, hard-working farmer even with his white sparse hair and inability to even lift his fork without shaking. He will always be.

Here we go again!

Its been a while…almost 2 years. And now that mom is feeling pretty well, its my dad’s turn. He was diagnosed with Rheumatoid Arthritis last fall. It has affected his lungs as well as his joints. In a few short months he went from hardworking farmer to a man who moves around the house carefully dragging an oxygen hose. And as hard as it is to watch, its painful to love.

The Rest

I can’t believe how tired I am. I go back to work on Monday and I am looking forward to it. But some down-time would be great. Yesterday was a busy day. It was our last visit to the hospital. Mom had blood work at 7:00am, a CT scan at 7:30, breakfast and then Physio at 10:00. I tried to get the running  around done while she was doing part of her physio so I got my exercise, running back to the parking garage, to the parking office (the other side of the hospital from the garage), up to physio, back to the parking office, to the pharmacy and then back to physio. Crazy! Then learn all Mom’s exercises for home with her. Afterwards we started saying our good-byes. There was some wonderful people in the transplant program, friends we had made over the last six weeks. Only those who have gone through this process can understand just how easily friendships are made as you cheer each other on.

After we left the hospital, we headed back to the apartment to pack up. It is scary how much stuff we accumulated in the last month! Of course it had snowed overnight over 5 inches so packing things out to my Escape was a little more interesting. I managed to fit everything in, including my mom’s chair! I cleaned, vacumned and tidied up. By the time we were ready to leave, I wanted a nap!

I will almost, but not quite, miss these places. The hospital was a busy, but not impersonal place full of caring people. The little apartment was our respite even when it started to feel closed in. It was an experience that we didn’t really expect but one I won’t ever forget.

The Home Stretch

We got permission yesterday from the doctors and the transplant team to go home at the end of the week! This has been a 6 week journey to this point and we are down to the home stretch. And its a good thing!

I am a fairly solitary person. To get some alone time, I have been staying up late. This doesn’t work all that well as I am a morning person and don’t sleep past 6 am! As well most of Mom’s appointments are early so we head out at 6:30!  Yesterday, I actually left Mom alone at the apartment and went and visited a friend. I played music as loud as I wanted in the car!

Even Mom remarked today that its a good thing that we’re going home as we are getting on each other’s nerves!

I think this is a part of caregiving that doesn’t get enough attention. I love my mom so very much, but being with her 24-7 is another thing!

Wading

Mom is learning a new skill. She is a writer, but for years she has written on an old typewriter. True, it was electric, but still a typewriter! Her last book was done on their desk-top computer with a lot of coaching. She did pretty well. But the desk-top is at home and we are stuck in the city. My lap-top is old and plagued with viruses. I didn’t want to put Mom’s book onto it, to lose the changes if it crashed!

So Mom decided to purchase her own. With some long distance advice from a techie friend, we bought a small laptop. I installed the office program and showed Mom how to insert the “stick”. And yes, even that was an adventure! Yes, Mom, it can go in any of those holes, No, Mom, only the one way! Of course, she decided she needed to do this while I was cooking supper, which did get a little well done! Hey, didn’t I go through this stuff about 15 years ago with my kids!?

She is fine with the keyboarding part. (Mom, don’t hit the keys so hard!) Now showing her how it scrolls down, to copy and paste….oh, I think we will leave that till I’m cooking supper tomorrow!

Wading

Mom is learning a new skill. She is a writer, but for years she has written on an old typewriter. True, it was electric, but still a typewriter! Her last book was done on their desk-top computer with a lot of coaching. She did pretty well. But the desk-top is at home and we are stuck in the city. My lap-top is old and plagued with viruses. I didn’t want to put Mom’s book onto it, to lose the changes if it crashed!

So Mom decided to purchase her own. With some long distance advice from a techie friend, we bought a small laptop. I installed the office program and showed Mom how to insert the “stick”. And yes, even that was an adventure! Yes, Mom, it can go in any of those holes, No, Mom, only the one way! Of course, she decided she needed to do this while I was cooking supper, which did get a little well done! Hey, didn’t I go through this stuff about 15 years ago with my kids!?

She is fine with the keyboarding part. (Mom, don’t hit the keys so hard!) Now showing her how it scrolls down, to copy and paste….oh, I think we will leave that till I’m cooking supper tomorrow!

Wading

Mom is learning a new skill. She is a writer, but for years she has written on an old typewriter. True, it was electric, but still a typewriter! Her last book was done on their desk-top computer with a lot of coaching. She did pretty well. But the desk-top is at home and we are stuck in the city. My lap-top is old and plagued with viruses. I didn’t want to put Mom’s book onto it, to lose the changes if it crashed!

So Mom decided to purchase her own. With some long distance advice from a techie friend, we bought a small laptop. I installed the office program and showed Mom how to insert the “stick”. And yes, even that was an adventure! Yes, Mom, it can go in any of those holes, No, Mom, only the one way! Of course, she decided she needed to do this while I was cooking supper, which did get a little well done! Hey, didn’t I go through this stuff about 15 years ago with my kids!?

She is fine with the keyboarding part. (Mom, don’t hit the keys so hard!) Now showing her how it scrolls down, to copy and paste….oh, I think we will leave that till I’m cooking supper tomorrow!

Wading

Mom is learning a new skill. She is a writer, but for years she has written on an old typewriter. True, it was electric, but still a typewriter! Her last book was done on their desk-top computer with a lot of coaching. She did pretty well. But the desk-top is at home and we are stuck in the city. My lap-top is old and plagued with viruses. I didn’t want to put Mom’s book onto it, to lose the changes if it crashed!

So Mom decided to purchase her own. With some long distance advice from a techie friend, we bought a small laptop. I installed the office program and showed Mom how to insert the “stick”. And yes, even that was an adventure! Yes, Mom, it can go in any of those holes, No, Mom, only the one way! Of course, she decided she needed to do this while I was cooking supper, which did get a little well done! Hey, didn’t I go through this stuff about 15 years ago with my kids!?

She is fine with the keyboarding part. (Mom, don’t hit the keys so hard!) Now showing her how it scrolls down, to copy and paste….oh, I think we will leave that till I’m cooking supper tomorrow!

Pausing

“Stop and smell the roses”. A saying that is telling us to slow down and enjoy the little things in life. Mom and I were discussing tonight some of the little things that we enjoy.

1. The smell of the barn wood after a rain. Its a sweet smell that is like no other.

2. the purr of a cat curled around your boots as you step outside.

3. the tick of a clock.

4. the glow of the moon on the snow as you look outside on a really cold winter night.

5. The feel of a horse’s whiskers on your palm as it eats treat.

Its easy to complain about little things. Its harder to make a habit of being grateful for the little things.

Sideswiped

Not mom, but I got sideswiped this morning. Mom has been doing really well. Her tummy issues have calmed down. Dad took over for the weekend early so I am home.

I applied for our government’s Compassionate Care benefits from Employment Insurance. It is supposed to allow a caregiver of a critically ill person 6 weeks of leave with a 2 week waiting period, so really 4 weeks of benefits.

I have been on leave for 4 weeks already. I finally received a reply from EI this morning stating that they are allowing my claim. Thats good. The crappy part is that they disallowed the first week and a half of my claim. With the waiting period, I will only get 2 weeks of benefits! And the benefits are a measly 420 a week. This barely covers my car payment, never mind the rest of my regular expenses. I think I have figured out why the first part of the claim was disallowed. The form that the doctor fills out only has a date for when he is signing the form, not for when the actual critical care starts.

Out of pocket expenses are a lot, especially for those who are from out of town. Dad rented an apartment, there is food expenses, fuel expenses, PARKING expenses, and so on, plus all the regular bills at home. Thank God we don’t have the medical costs that other countries do!