22:16 Mar 28 2025
Times Read: 140
Hey all. Im putting this here as Im not got the energy to send each a reply. And I did not check the spelling, the flow so... sorry. Update-
Life has changed so much. Im sitting in the homestead, a place I have not lived in for over 35 years. My brother is across the room, doing his treatment as we watch the local news. We spent the day visiting my sister who has been moved into a long term care floor at a hospital. Well- not really a long term care but its a place you go to for at least 30 days as she has not winged off the vent. She has a trach. After a stay in the Hospital ICU for over 38 days- she was moved there.
She was moved close to two hours away, into a bigger, better hospital within hours of being sent to the local hospital. They put plates, screws, pins in her bones, ankle. But warned she might never walk again at her weight. They really didn't want to do the surgery but you can't just leave her with broke bones.
well they did for ten days- since her sugar was out of whack. She had to do, for the first time, dialysis for her diabetes. She was a straight out vent for as long as they could- thinking a month. Once they got her stable- they did the legs. 7 hours surgery.
She is unable to talk. To eat, drink. Due to the oxygen setting on her track. Feeding tube. Which just so frustrating for her. She moves her mouth, tries to tell you- but nothing. When you say you can't understand she is just ready to throw things. That was today. But then it was better then the few times I have seen her. When they transported her from hospital to the Long Term Care place in another hospital 30 miles away ( and no- not closer to me ) she ran a 103 temperature, and got a infection.
To see her you have to wear cover plastic robe, gloves, and mask as she is in bad shape. She has a small bed sore on her butt, her wounds are seeping, and still her white blood counts are high. Her temperature running up and down.
They have talked of getting her out of the bed- which I know she would love. She sat up for hours in the nicer Hospital she started at. She asked to be in chair even. It was more a recliner, but she moved. But this LTC place- not a nice. They are ordering her a chair for her. They have chairs she can sit in but they are used in other rooms, people. They want her to have a dedicated chair to keep infections low. Because let face it- she get an infection she isn't strong enough to fight it off.
The night after her leg surgery- she came too and... well... she told those there, family not by blood, that she was ready to go home. She did not want to fight, to hurt. She wanted unplugged. Her best friend, as this nice hospital is in the town she lived in for 40 years before coming home to help here. She has friends there that are like sisters, and a home even. They called me and told me what was happening. As in she told Dr she wanted the machines off her.
Safe to say that was an night. Im 2 hours at least away, with my brother who is not able to understand or help in any way, hearing this. But really I was not shocked. After my one sister, her twin, passed we had a long talk about life. What if this happens, what if that happened. From it I know it hit two of her issues- Long term care. And machines keeping her alive.
While sis healthy has failed in the last year, more on me and my brother, I knew it was coming. She was going to get hurt. At Christmas I had tried to talk to her, saying she was falling more and more, we needed to talk about care. And you will not find care in this town for her, trust me. I tried to talk to her about selling out, move to her old town, closer to her friends, her home.. I am willing to move, buy my own home. She kept putting it off but now it here.
So what happens? I think it depends on her improvements, if any. Dream- she gets off vent. She, even if just limited standing, can stand. She can move into her home or I can buy a home more handicap friendly. In the bigger town, more caregivers. And we go from there with Ray staying with both of the homes, as he wishes. Bigger town, more to do for seniors, better drs. I have no issues with it.
That is what I am holding on to. Today she was alert, talking even if we can't understand her. Last time she was out of her mind with a high temp, and this morning had to fuss with my brother to get him moving as he said he didn't want to go. It upset him last time, saying she was dying.
To say the worry over my sister, her two days of wanting to unplug, and then add brother on top of it... its been a lot. Guess I forgot to tell you what happen on her "unplug me" attitude. Well I loaded brother into the car, I was bed side by 9 a.m. after no sleep that night, and I told her to tell me she wanted to die. That, as she is not able to decide her medical needs as she on vent, she need to look me in the eye and agree that is what she wanted. She wouldn't. Her friend said it was a total flip, acts like she didn't want it.
Sorry- but since she was non verbal, I wasn't taking your word on it. I know if she gets to the point, I will make that call as it is what she wants. But she was aware enough to tell me. She didn't. So that flagged me to watch her closely.
Upsets me that Im not able to stay with her any length of time. Its a hour half drive each way. Brother oxygen and his own mental ability- about 4 hours is the most I can visit. Then its drive home. That alone is hard on him at 71 years old. And its a chance to catch something when we go in. Leave him at home? Can't. He has to have someone with him all the time. Other caregivers? Yeah- up to $27.00 a hour, sit in a home, watch over a mobile, elder man.... can't find anyone who wants the job. Why I want sis to move back to her big town, better town, if she gets out of the Long Term Care. Our small town you can't find anyone to help.
Do I get paid? Yes- 40 hours a week. Other then that, no. Why? I took over guardianship on my brother. And my sister as I needed it to file for her disability. We joked about that today- that I was in charge of both of them. Sis gave me a eye roll, brother just laughed. Yeah- its like that.
But brother is adjusting. Our days are slower as with sis we always doing laundry, care of her. Now he sleep all night. At most we do 5 loads a week, not a day of laundry. He is understanding what is happening, not so much why she can't talk, but understands her legs need to heal.
Me? Im worn out. I feel like I can sleep a month. I am really a person who hasn't lived with someone for over 35 years and now have someone with me 24/7. That- I don't like. I can't seem to recharge. I moved things from my home to the homestead, crafts, clothing, meds. Laptop today, why I am able to do this update. I have reached out to case manager, to other services. I can't get even a respite service to come. Had one booked- never showed. It really isn't worth the trouble now. I given myself up to the hold pattern. Hold on ever being in my own home, alone, sleep in my own bed. Hold on what is going to happen to my sister. Hold on so many things.
Makes me think of Mom, Dad. They would say to me- just do what needs done, it will work out. Take care of your sister, brother, nothing else matters. Sure- tell the rental that has AC unit issues that I had to handle calling in repair this morning. Or the rental trailer that is being refreshed, dealing with a tub issue, and sooo not looking forward to the whole showing to people to find that one person who passes the application.
Sell? I would love to. But I learned with big events, life changing events, not to rush into things. Hold... just hold. So how am I? Im holding. Holding on to my love of family. Holding on to my sister I miss so very much. My anger at my brother who dementia is getting strong as simple request anymore is a fight. Im holding on hoping to have help at some point. Holding on Im making the right calls on what seems a thousand things a day.
And holding on to the belief it will all work out. That Im doing the best I can. And really- what else can I do?
Thank you to all who reached out. Now that I have my laptop, and if I can get some time alone, I will try to update more. If I do contact ya, know its at the point of "I NEED HUMAN INTERACTION" lol One who is not the IQ of a 5 year old that if you say sky is blue, he fight it is green. One of these days Im going to say it sure is, fuck it, lets mow the sky. :)
Now I need to go help brother fix his tv remote. Later tatters. Miss ya all.
COMMENTS
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OldSoul
23:33 Mar 28 2025
*hugs* Miss you too
RedRiverMetis
03:01 Mar 29 2025
I know it is so hard to do what you are doing right now and felt the same way. When my mom needed me in her last few weeks slowly deterioration and pain fill right up to the end. You go through so many emotions, up and downs, trying not to cry in front of your loved one, it is so not easy but we do what we have to do. Your so tired, not just from no sleep but emotional, physical, mentally. I watched my mom one of the strongest women I knew waste away and I had to change her, bathe her and fed her. I feel your pain and I send you hugs and I hope you can rest soon.
Bacardi
09:39 Mar 30 2025
Sis, always know that I am here for ya...when you need that human interaction, just and ear to bend, or a shoulder to lean on. Or if you need a quick pick me up or laugh. I love ya to pieces always. Please get yourself some rest when you can!! Miss you so so much! All the love to you and yours. You are all in my thoughts and I will continue to send the good ju ju your way!!
Morrigon
16:19 Mar 30 2025
Times like these I wish even more that we were all closer together. I miss you. We're sending you love!
PhoenicianDream
23:51 Mar 30 2025
Hang in there beautiful. ❤️ I hope you get some help with brother soon. You need time to recharge.
CuRsEdToDaRkNeSs
07:49 Mar 31 2025
You call me ANYTIME hun. I am always a phone call or text away and will gladly interact... you can call and just vent to me if you need to.. you know I will listen and send you all the long distant hugs that I can! You are such an amazing person Ratty... luv ya!