Day at the Hospital - for me

Status
Not open for further replies.

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,827
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Well yesterday was interesting. I got up and could barely move. At first it was just a slight annoyance, then the pain grew worse. Thought for sure it was a kidney stone, as I've had those before.

Had to call our son home from work and my MIL over, just called her for help but then realized I needed to be seen. Called the Dr office first, but no available appts, so off to the ER. after some good pain meds and a CT, they determined it was indeed muscular or tendon related, no stone.

Thankfully our daughter works for a PT and I was able to go get a therapy direct from the hospital.

Came home with pain meds, exercises and heat and cold therapy to do. My worst nightmare since it severely limits what I can do for Brian.

I'm thinking our getting him up in his chair this weekend twice and outside contributed to this. Yes we used the hoyer, but since the PWC controls are still on the arm of the chair it's makes getting him thru the door quite interesting. He was thrilled to be outside and I was happy to see him up, first time in 2 years.

All that said emotionally and physically, I'm broken. I mentioned on roll call about our daughter and her struggles and this just made her worse. She sees the therapist on Friday, but this only served to solidify her feeling so that she can't leave me here alone.

I don't know what I'm going to do. I'm spent, it would take everything we have to place him somewhere, and there isn't even a place locally that could take him.

Even the staff at the hospital could not believe we could not get help, and called in yet another social worker. They did some digging and still came up empty. The neighbor behind me is still digging as well. There is nothing, short of us becoming destitute to do it.

I'm spent. Too many years and our April episode just did a huge number on me emotionally.

Just ranting, thanks for listening..

Hugs,

Sue
 
Oh Sue, my magic want is so broken and I so want to fix so many things.
I'm sending you a truly empathetic hug. This monster just takes and takes and then still finds more to take when we think we are spent.
 
Sue, I really hate what this monster does to us. What it does to the entire family. It changes us all so much, how we live our lives. This breaks my heart. Big hugs to you! I wish I had some helpful answers.
 
I don't even know what to say Sue. Please just know I'm thinking of you and wishing you strength. Kate
 
Oh, Sue, that's just heartbreaking. I'm so sorry you are going through this without the help you really need. Hoping so much that that changes soon.
 
Sue, take care of yourself! You and Brian deserve more outdoor excursions. Make sure a muscle relaxant is one of your meds. And get the joystick moved -- takes all of 5 minutes.

Best,
Laurie
 
When we are near breaking point already, it only takes a seemingly small thing to tip us over an edge.

Sue I have been in awe of your tenacity in managing the way you have for so long. I've wondered how you do it all. Now it seems you are suddenly at such a crisis, but really you've been at the edge of this crisis for a long time. It only took that one something to tip you past near crisis into full crisis.

I don't really have any wisdom here, just so touched by your story and wanting to be sitting with you and talking as a friend.

I can sure understand that your daughter is now truly terrified to leave you - she is right. You need every minute of help that can be had from everyone that can help. Yes she needs to be 22, but seriously this is crisis now.

I'm truly thinking of you, I kept waking through the night in fact and just want to hold your hand. xxx
 
Laurie - yes, muscle relaxant in the mix. Also, we own a stim machine from when Brian first got started with PT prior to dx, so that is being utilized as well. And my daughter boss showed her how to tape my back, so that is done as well. Along with the ice massage etc. It is helpful to have family that has or has access to the information needed to help care for my back.

Brian's chair is a permobile and I believe we are waiting on the proper attachment piece to get the controls mounted on the back. Permobile as a company is going through issues over in Germany and creating problems getting needed parts here.

Tillie - thank you my friend. The virtual hugs/hand holding means a lot. I did reach out to a supposed Skilled facility via on-line today that is supposed to be not too far from here. They are supposed to contact me. Told them upfront, ALS trached and vented. We will see. At least its an inquiry.

Hugs,

Sue
 
Just making that enquiry is a huge step, regardless of the outcome - more hugs xxx
 
Tillie - yes huge step and I'm not expecting much. Probably cost a small fortune. Our healthcare system here and aide stink. Since I don't qualify for help with home stuff, I won't qualify for help with a home placement either, but I have to find out just how far out of reach it really is. Thats the sad part.

hugs,

Sue
 
Sue,

We live outside Philly and the ALS Association of Greater Philadelphia has a grant program for in-home care. When we went to clinic, the coordinator encouraged us to apply, because as the primary caregiver for my husband, I am feeling burned-out (although I have not been at this nearly as long as you). I did not think that we would qualify, but apparently we do. The program provides for 2-12 hours of care per week. A nurse and health care aide came today for the first time. The aide is now scheduled to come 2x a week for 2 hours. Does the Pittsburgh area chapter have anything like that?

Hope your back issues clear up soon. Hugs!
 
Jrzygrl - yes our ALSA does have a grant program that I do currently have. Due to the vent, the cost per hour is higher as I can't have an aide it has to be a licensed nurse. Generally I use it in blocks of 8 hours. 2-4 really doesn't help much for me. If I want to get out of the house I need more time. It works out to about 2 days a month. It he,ps but no enough to make my daughter feel comfortable.

Hugs,

Sue
 
I grieve for your suffering that the heavy burden of ALS has put upon you. I often grieve as I see my wife suffer flares of pain in her back and arthritic fingers as she cares for me.
______
Bruce
 

Attachments

  • 20141205_132509 (3).jpg
    20141205_132509 (3).jpg
    55.9 KB · Views: 184
Sue I just wanted to say you have loved with this so long and you are amazing. I hope you feel better soon and I am so sorry you are going through all this.
 
Sue, I'm just touching base here after quite some time. I really am feeling for you right now. I want to say how strong you are and it's ok to vent here. You are doing an amazing job caring for your man. I can't help from over here, but I am sending you my words of encouragement. I hope you can feel better movement soon. Your daughter will understand that you need her too. Especially now when you are unable to move freely. ��
 
Status
Not open for further replies.
Back
Top