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This is getting harder


Longjohn

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My wife has abdominal pain. To change the bed or put her on the bedpan I have to roll her on her side. There is no other way to do it. When I do she moans and groans and pushes back to try to get back on her back. I’m trying to hold her on her side while I am doing what I have to do. One hand holding her up and the other doing everything else. I guess I’ll just have to keep her doped up on morphine all the time because I never know when she needs to use the bed pain. This is getting depressing, it wasn’t a fun job to begin with. I just needed to vent. 

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Vent all you need.

Did the two of you talk about end of life plans?  What she wants, doesn't want?

Are you getting enough help?

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She has the do not resuscitate order which really isn’t needed. She is at home with no trauma team waiting just down the hall. When I got a new PCP the papers they had me fill out had a DNR form and I signed it. When I had my hernia surgery I told the surgeon I wanted to change that because I need to get home to take care of my wife. He said when you have surgery they always resuscitate if needed order or not. That’s a good thing because I coded twice and had to be resuscitated. Even if a trauma team was at the end of our dirt road they would never make it in time.

As far as end of life plans she has none. We have no idea when she might pass to gather family around. Every morning I quietly walk over to see if she is still breathing. With the rona virus you can’t have a regular funeral so we don’t have any plans for that. Probably have a celebration of life party for her once things get back to where that is possible.

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This is impossible to deal with during normal times, during these historical times when you can't have friends and family over to help, it must feel unbearable.  As for her plans, did you ever discuss hospice care, outside of the house?  I had a friend whose husband tried to care for her in their home.  She had planned to die at home, but he became overwhelmed and she was moved.  I think they were both better off for it.  My grandfather took care of my grandmother.  He was in his 80s at that time (he's 99 now).  I visited at least once a month.  It was not good for either of them. 

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From what I see going on in the world I think I have a more normal life than a lot of people. My wife is doing much better. She still can’t sit up or stand but her pain is less. Her burn on her back is almost healed up. The expensive burn ointment the hospice nurses kept putting on her burn were not helping and I over ruled them and switched to triple antibiotic ointment. Every time I get stitched up from a bike crash or a skin cancer surgery that’s what they always tell me to use.

After my wife had breakfast this morning she went to sleep. I put on a playlist of Beatles love songs and listened to it very quietly while I cleaned up the kitchen and made up some more hummingbird food. I came back in the living room and got on my iPad and checked the forum while still listening to love songs. My wife woke up and turned on XM channel on the TV. My music is better quality. I picked up my Bluetooth headphones and continued listening to Beatles. :D

If she needs anything she will have to call me on the phone.

My LBS called to tell me my bike is ready to go. I had them do a tune up on it even though it didn’t really need it. I don’t imagine I’ll get to ride it until either my wife gets a lot better or passes. I might order a new 520 if that happens. The new ones have disc brakes. I would get a dyno hub for lighting and charging devices this time. I think I will be ready for a road trip by then.

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I’m tired, between the CLL and the beta blockers the cardiologist has me on I wake up tired, cook meals tired, take care of my wife tired, do laundry, dishes, take care of the furnace tired. Everyone is dying, HB’s wife passed away this morning, scrapper’s wife passed a year ago, tonight they had the memorial service for a missionary friend of mine. She died in May and I didn’t even know because I haven’t been able to go to church for a year. I got to watch the service on FB live. Nobody at the service was able to speak without getting choked up. On the bright side she did enjoy 54 years of marriage and died unexpectedly from a heart attack. I remember thinking I probably wouldn’t be able to have a funeral service for my wife because of covid. 
The weather is getting cold and nasty. I always have trouble this time of year because it is so long before the weather starts to improve. My firewood girl is having trouble getting firewood because so many mills are not working. I’m thinking of ordering a load of logs and slice them up for firewood. The logs are more work and more expensive than the cut slabs Natalie brings me. Close to $1,000 for a log truck load of logs.

Something is going on with my ribs on my right side. I have had a couple nights where the pain kept me awake most of the night. I’m being a grump on here because I have to stay upbeat and cheerful around my wife. 
Tomorrow my wife’s sister is coming over right after church. I think I’ll make spaghetti and chicken.  I need a vacation.

On the bright side I have the best Hospice team in the world. Our aide is here for about an hour Monday through Friday to help me care for my wife. She is so cheerful and sweet and is so gentle and caring when working on my wife. Our nurse visits twice a week but will come as needed. He makes sure I have all the drugs I need and supplies like disposable bed pads, wipes, lotions, body wash, powder, and nitril gloves.

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This sounds like a lot more burden than one person can handle.

Can you get more help from your sons?

Can you get more time from hospice?

It's not a good solution, but can you move you wife to a hospice facility where she'd have fulltime care?

I think of you daily.

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Today was busy. When I changed her disposable bed pad yesterday I put three new pads down. She had diarrhea this morning and I was glad I had three pads under her. I had to change all the pads, top sheet and gown, wash her up after I cleaned her up, apply skin protectant on her lower region. She was doing fine, I fed her her breakfast and then had my breakfast. I just sat down to see what is happening on the forum. I read a few posts and them my wife said something just popped and scared me. It was something down by my crotch. I checked her and didn’t see anything but she was all wet. Sometimes for some reason she has leaks around her catheter. I like to use a wash basin with Olay body wash and a washcloth to get all the pee washed off so she doesn’t get skin burns. As I was applying skin protectant her catheter fell on the floor. That pop she heard was the balloon filled with saline that holds the catheter in place blew out. Never had that happen before. I had to call the weekend nurse to come change the catheter. She is all fixed up now and will probably sleep well tonight.

My cat Oreo who always ran away from everyone but me liked the nurse. He was rubbing on her legs wanting attention. I’m glad his ears are healing up and not oozing anymore.

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More catheter problems tonight. It was working so well this morning. Her urine was light yellow and clear and it was flowing freely. Tonight she said she was all wet. Sure enough her catheter bag didn’t have anything more in it since it was emptied at noon. All the underpads and sheets and her gown were soaked. I changed everything and asked her if she wanted me to call a nurse and get the catheter changed tonight. She said she wasn’t up for that so I’ll be doing another bedding change in the morning. I have a couple more loads of laundry to do tonight so I’ll have enough bedding for tomorrow.

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