Jenn iscurrently working on the application process to a long term facility. It's been a hard month. It's actually "been brutal." Every time Tina has a back spasm, she wonders what else in her body is shutting down.
Tina knows that things can't continue the way that they have been going. There have been great people that have been helping but there is never enough. There needs to be at least two people to help with Tina now. They continue to struggle with PSW's not showing up. This causes a lot of anxiety to her when the scheduled shifts of homecare workers don't arrive when they are supposed to be there.
Tina came to the conclusion that they need to apply to a long term facility. They were trying to prepare themselves for this decision since the day that she was diagnosed. They had expected it to come much later than this.
Tina doesn't want to be read to or to watch tv. She barely feels like talking. Her days are filled with sleeping or sitting quietly with her eyes closed. Her attention span is very short and so is her tolerance for most things.
Tina started new meds and it is the hope that these will give her back a little spark and take away some of the anxiety that has caused her to be so nauseous. Today was the first day in two weeks that she hasn't had a panic attack.
The occupational therapist was advised with how quickly things were progressing. She was shocked at the speed that the ALS was moving.
The nurse has ordered the catheter and that is the next step for Tina. She continues to need IV daily to keep her hydrated. A feeding tube has been discussed with Tina for the future.
So here we are...Tina has picked their top four choices for the Long Care Facilities. They can pick up to 5. In order for the process to be expediated, they need input from the professionals that are aware of Tina's fast moving condition. Tina's nurse and family doctor understand the urgency for a care facility. They need input from the neurologist. He hasn't been returning their calls. Tina was told that this was the slow moving ALS. In less than 8 months from diagnosis, she has lost all of her mobility and this disease has taken over so much.
Once the application is completed and the choices are submitted, they will need to accept the first opening. If it isn't their first choice, Tina can be moved to that facility when space is available. (This is so hard for me to type...how can I be talking about my sister needing this type of care?....our hearts are broken.)
This post has taken so long to type....how do I tell you all we have gotten to this stage? We know that this step is necessary for Tina's care and important for all the caregivers that haven given so much love, time and attention to Tina.
Please pray that the right care facility opens for Tina. We need a smooth transition. Please pray for Tina as this will be a hard move for her. Pray for the boys....this isn't what they wanted. Pray for Mom and Dad...no one ever wants to see their daughter go through this. Please remember Carol and I in your prayers...this is so hard. Pray for Jenn and especially Emma who has been there for Aunt Tina.
We are STEELE here....leaning on you and each other....
