After waiting an entire year (or maybe more) from the time we applied for home services to the day he moved in...... the day was October 7th. I remember when the case worker came in to the nursing home and said that everything was in place and all we had to do was pick a day. We didn't answer her right away because we both knew that being anxious to have him move in and the reality of getting all the vendors in place, were things to consider. I had already been in contact with the vendors that I use for my girls so that the nursing home just needed to order the supplies (they require physician orders initially). The only thing we were really working on was the ventilator itself. The company I use for Taylor wasn't accepting new patients for ventilators so we needed to find a different one. The social worker at the nursing home had a contact and I let her get it all set up. Just .... maybe 2 days.... before he was to move in I asked for the respiratory therapist to come in and go over the transition. Because the State was paying Mike's medical expenses they weren't too keen on paying for 2 ventilators but he couldn't go home with the one from the nursing home and he also couldn't go home without one. It's still rare enough for people to be living in the home setting with a ventilator that the State regulations haven't caught up with changing their rules to allow for things like this. The vendor came in and when I asked what ventilator he had available he gave me the make and model of a ventilator that I didn't recognize. I pulled it up on my phone and when I saw what he planned on giving him I knew that they were just pulling out an archaic model from the back of storage to make the most money. I refused the ventilator even at the risk of delaying his move in day. These things are important. Part of what I wanted to accomplish was to get the same make and model that I was already familiar with, being Taylor's ventilator. With all the stress of transitioning his care over to entirely me, I didn't want to relearn another vent. And I didn't feel comfortable using the company that the nursing home found because of what they offered and also their answers to other crucial questions like response time to troubleshoot events. I called around and found a company that was able to meet all our needs and had one in stock (another problem commonly found). This new company was great, the respiratory therapist was someone who really cared about Mike's needs and respected my comfort level with the vent I knew the best.
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress. Move in day was such a whirlwind. Mike was so over the moon happy, as was I, and it all happened without a hitch. I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike. Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips. Not just the anxiety that he had with being moved around like that but also the pain. Mike was a big guy and didn't always fit on the length of a gurney. Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him. I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him. Every bump they hit, every corner they turned required a quick visual assessment and adjustment. Also, his butt was not in good shape. What I mean is the skin was not intact due to the care given to him at the nursing home. He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing. Having the broken skin on his butt made the transportation events even more painful. We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself.
As soon as we got him moved over into his new bed in our house, I took a picture of him. I wanted to capture that moment. I am so glad that I did even though he didn't like pictures of himself (at first). I don't need the pictures to bring up his face yet, but one day I might. He was so excited he couldn't sleep. Even with all those drugs in his system he was so alert and so happy. I brought the girls into his room to see him. They had already met when I brought the girls to the nursing home to visit with him. We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs.
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon. There was so much more than just medical needs with Mike that my input was required a lot of the time. So even with a nurse, I was never really off duty. The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled. That wasn't the case with Mike. If I was in the house I could hear everything in his room. I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann". That was 24/7. It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me. I walked in on the most ridiculous of situations. Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly. Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill. It wasn't received that way. They usually just sat back down and got back on their phone while I tended to his needs.
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it. He knew he was finally safe and loved and cared for. I knew that he was finally able to live without fear. ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone.
So this month is another memory for me to experience without him. But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here. That helps.
