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Posts Tagged ‘copd’

After 30 years a new family will live in my Mom and Dad’s house. I finished cleaning out and cleaning up the house yesterday. I had never seen this house empty. It was a bittersweet day; the end of an era for us. Empty houses hold such promise, I hope there will be lots of sweet for the new people and hardly any bitter.

I stopped in to see Dad before going to the house. He was sleeping. I stood there and watched him sleep for a while like I used to do with my kids. Unlike with my kids watching my Dad made me sad instead of happy.

Even in his sleep breathing is a struggle. He looks so small and the effort to move air is so hard for him. Part of the problem is he lays down flat to sleep. With as bad as his lungs are he should be sleeping sitting up. He has never been able to sleep that way, so he won’t.

I left after a few minutes and went to finish the house. There wasn’t much left and I had everything cleaned and loaded in my car before noon. I checked the house multiple times to be sure I had everything.

Once done I set my timer and sat down on the floor and meditated, remembering the fun times we had in that house. Remembering the sad times we had in that house and missing my family. I cried a little, I smiled at the memories, I left wishing the new owners all the happiness we had experienced and more.

I stopped in to see Dad before I headed out of town. His breathing was still labored and I was lucky that the respiratory therapist came while I was there. Because he was struggling even after using his rescue inhaler she had them give him a prednisone. He is to take it again today if he is still struggling.

He can’t be on prednisone all the time because of the side effects. ‘roid rage is a real thing. Sister B and I have been on the end of some of that and the staff at the home does not need to deal with that if they don’t have too.

Dad’s memory isn’t good. He has a hard time understanding what is happening. He forgets when he took his medicine, he forgets the names of the people who are taking care of him. It frustrates him that he can’t keep things in his head. It also makes him anxious. Brother G said he talked to him today and Dad sounded awful.

We are on the downhill slope. I am still hoping that it will be a gentle bunny hill but it feels more like we are heading down a mountain. COPD is a horrible insidious disease. It is robbing us of our father/grandfather/great-grandfather/brother/uncle.

There are times when all I do is feel. Everything feels raw and right at the surface. Other times I feel numb. Sunday I wanted to cry until I threw up. Yesterday there were tears but not as many. Today I feel rather detached from it all. That inertia is very hard to overcome. I know it is grief. We are all feeling it. I will write about my grief another time.

The end of the era of visiting at the house is over. I don’t know how long we will have with Dad but I am so very grateful for everyday.

Happy thoughts for a happy day!

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Visiting Gpa

I went to see Gpa this week. It is so hard to see him. He looks so small. My Dad is not a big guy, he is 5’4″ maybe 5’5″ although he has always insisted he is at least 5’7″. But he has always seemed bigger. He used to have a very big personality. He was the first to have fun, he was the first to volunteer, he was a presence. Now he is more of an absence.

He has become so introverted. Everything about him is turning inward. He seems to have lost that gregarious presence that he had. I know a lot of it has to do with this terrible disease COPD. His breathing is labored it takes all of his energy just to breathe so that  . . .

His house was on the market for 1 week and we had an offer which we have accepted. The closing is 1/31. So fast, I was prepared for it to take a while. Other houses in his area have been on the market for much longer. The good news is with this we can keep him in a private room for much longer.

My dad complains that he has no time to be social. I couldn’t understand what he meant until I found out besides physical therapy and occupational therapy he has 8 scheduled breathing treatments a day. The first one at 5am and the last one at 9pm. There are treatments through the night as he needs them. This means that every 3 hours he is having a breathing treatment. And he needs them, by the time the three hours are up he is wheezing and turning gray.

My dad is physically smaller as well. He is having problems eating. Nothing tastes good, many things upset his stomach leading to other issues, and frankly the COPD makes him not hungry. When you get to n-stage of any illness it takes away your desire to eat. And my dad has been n-stage for a long, long time.

I was talking with my brother G and he mentioned that Dad was first diagnosed with COPD 30 years ago. I think one of the reasons it has taken so long for the COPD to get so bad is my Dad was very physically fit. Aside from the smoking he was very active, riding his bicycle everywhere, building things for the church, and more.

Now when I go see him, he is so tiny, you can see the bones in his face. His legs and arms have no muscle tone. The lack of oxygen is affecting his memory. His skin tone is grey, and he gets tired so very easily.

He is struggling, we are struggling. We keep trying to keep him here, I am not sure he wants to stay. I am not sure I want him too either.

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It has been a stressful fall. My dad (Gpa) has moved into a nursing home. We had been looking at assisted living places when his health took a drastic downturn. We, my siblings and I, were lucky that he didn’t fall and break anything or set anything on fire, etc. He just got very sick and went from sort of mostly functioning to not.

We have been getting his house ready to sell. This is a lot more complicated that we all anticipated. All five of us were able to get together in early November to begin the process of cleaning out the house. It has been eye-opening. My parents kept a lot of paper. We found tax returns as far back as 1971. We sent 6-8 leaf bags of burnables with M. Luckily she was able to burn them or we would still be shredding. We filled up a big dumpster, donated many items, gave away things and all of us have many things to find homes for in our houses.

His house is small so would be perfect as a first house for someone. The problem is for first time home owners the house has to have no peeling paint anywhere. B and I spent a few days in the basement finishing cleaning it out and scraping the floor, throwing away even more empty boxes and broken things. G was able to get the walls painted and M took more things out to the dumpster. I hope we are close to being ready to put it up for sale.

My dad looks very small these days when I go to see him. He is very unwillingly adjusting to living at the nursing home. He has been very angry, very confused, depressed and sometimes happy and accepting. We have been angry, confused, worried, and relieved that he is somewhere safe.

This is not how any of wanted this to go. In a perfect world he could have made gradual transitions into assisted living then as the disease progressed he could have gone to the nursing home. However, my Dads disease, COPD, is pretty insidious.

Don’t be fooled by the commercials on TV, they lie. They act like COPD is just a small inconvenience when in reality it is a horrible, horrible disease that robs a person of their ability to breathe. As you lose this ability it affects your memory, your balance, your life.

My Dad’s illness has affected all of us. The effects will be felt for many years. All of our children have seen his struggle and I am happy to say most of them will never smoke. But it is a sad ending to a formerly very active life.

The good news is while we have our prickly moments the five of us are on the same page and seem to work well together. Which is good because he will get worse and we need to be able to lean on each other.

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There are some things I just find gross and snot is one of them.  Gpa’s sinuses are all messed up and he has a lot of it.  His nose runs a lot because of the oxygen and he only has one tear duct so things don’t drain properly.  Needless to say I spend a lot of time trying not to gag.

He has been especially croupy lately.  The weather is changing and that affects his breathing plus Medicare or Linn Care or somewhere in between the two has changed his medicine and now he isn’t getting enough.  His doctor has prescribed albuteral through his nebulizer 4 times a day, and Medicare or Linn Care or both have decreed that he can only use the albuteral once a day.  Needless to say this is severely affecting his breathing.  By the end of the day it is a real struggle for him.  It takes his whole body just to draw a breath.  He has been going to pulmonary therapy lately to try to increase his stamina and his ability for breathing.  They assessed him as having severe COPD as opposed to very severe.   I was surprised and a little disheartened to realize that it will get worse.

There is a noticeable change in him since he hasn’t been getting as much albuteral.  Besides his breathing his memory seems to be affected.  Plus he seems to be getting obsessive about things that really shouldn’t be a worry let alone obsessed over.  I know that as people age they get fussier but . . . really?

I am sitting here watching him breath, I can hear the crackling in his chest, and his nearly constant small coughs to clear the gunk.  I get tired watching I am pretty sure he gets tired doing.  It amazes me that he just keeps on.  But I am glad he does.

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I am sitting here watching Gpa breath.  It looks like so much work.  Most of us don’t even have to think about it.  We inhale and we exhale over and over thousands of times a day with never a thought about it.   But when you have something like COPD it is something you constantly think about.  It is like watching a clock wind down and you don’t have the key to wind it up again.

It has to be very hard to be him.  I have my moments of feeling sorry for myself but I am an able bodied person with the potential to be here for a long time yet.  He on the other hand is an elderly man with a horrible chronic illness.

Our family has suffered another loss.  My cousin Jim was killed in a car accident on Monday.   He was considerably older than I am but he will be missed.   You always think you have time to get to know someone later.  When we are all grownups we will have time to get to know each other.  When we are all married and settled we will have time to get to know each other.  When our children are older and we have more time to think we will get together and get to know each other.  When our kids are grownup and out of the house we will travel and meet up and get to know each other then.  And then one day you can’t.  And it all seems like such a waste, we always have an excuse to not do things.  I think it is time to make up excuses to do things.

Like breathing we don’t think about our relationships, at least we don’t until something changes.  Something jolts us out of our usual patterns of inhaling and exhaling, we gasp, we sigh, we hiccup, we cry.   I don’t want to go back to only thinking of excuses to avoid getting to know people; I want an excuse TO get to know them.  I missed my chance with Jim.  I don’t want to do it again.

 

 

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Many of you know that Gpa has COPD.  It is a chronic illness brought on by in this case smoking, there are other causes but he was never a miner or any of the other ways of getting it.  I was having a discussion with one of my Aunt’s over my frustrations that he has given up.  He absolutely won’t do anything anymore.  It is very frustrating and sad.  He used to be one of those people who volunteered to help, who did things, and now he just sits and waits to die.  Here is what she said

“You know, Mm, it must be so hard to be your Dad.  It must be hard to face the future, whether you mean the next day or next year.  He knows he has no good news in his future.  Nights, when thoughts about dying and facing God’s judgment won’t go away, must be scary.  Days must be lonely and dull.  There isn’t anything to give him a sense of purpose, or accomplishment. “

I am not a religious person so the whole facing God’s judgment thing just puzzles me more than anything, I believe in being a good person and leaving this world a better place.  I am not afraid to die because I am sure there is a new adventure there.  What would scare me is looking back at my life and realizing that I gave up.  Life is so short, we don’t know if we get more than one go around, we don’t know what comes next, why not enjoy this one as much as you can? 

I disagree with her statement that there is no good news in his future.  There is all sorts of it if he looks.  There are new grandchildren and some day great grandchildren, there are weddings and graduations, there is the progressing of the seasons.  There is always good news; you just have to be open to the possibilities.  Giving up is what makes your days lonely and dull, giving up makes you have no purpose or accomplishments, giving up is quitting.

COPD is a horrible awful disease, but giving up is worse.

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struggle

My days are filled with worry.  I worry about my kids, I worry about my husband, I worry about my lack of a job, but most of all I worry about my dad.  There isn’t anything I can do to about my kids; my worries for them are mostly the “I want them to be happy and have a better life than I do” kind.  I worry about my husband working so hard and being so far away.  The worry about my dad is constant.

I see him struggle everyday just to breathe.  I see him struggle to get up and give himself his breathing treatments 4 times a day, every day.  Lately he has been ill and it has been a struggle to even get dressed.  He had been doing the dishes and going with me on some of the shorter errands.  Not anymore. 

We see the doctor almost every week.  We will see him more often as things progress.  I asked the doctor about physical therapy or exercising and the answer was “No” it will actually be detrimental to his health.  He just does not have the lung capacity to do it or maintain it. 

Seeing the x-ray of his lungs and all of the parts that no longer work was devastating, it really brought home what we are up against. The knowledge that this is as good as it gets now makes me so sad. Live like it is your last day, love like it is your last day, and know you are loved in return.

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