So this past month has been EXHAUSTING. Not only am I trying to keep our kids alive and happy but I am growing another human, which takes a lot out of me, I take care of Tim (minus the 4 hours a day we have caregivers- split into two hours in the morning and two hours in the evening) and on top of all of that… our caregivers quit. Well, the terms they used were “We need to drop Tim’s case because it requires too much skill to do his case.” The day we were informed they were dropping us was stressful and that fact alone brought on a migraine as I was trying to figure out how we were going to make this work without caregivers. Being pregnant, I cannot receive much pain meds for my migraine pain so I basically had to suck it up. We believe the “too much skill” refers to the fact that people need to actually work PRETTY much the whole two hours. We feel most of the people who intend to do this job, for anyone, are hoping for some babysitting time. Just the need to feed the person and make sure they don’t hurt themselves, which is usually is sitting and watching tv with their client.
This past company we had no problems with and loved working with them. They were the first company we actually thought treated their employees better than we have seen with other companies and we were happy with the office people and how they worked the scheduling. With this company, there were something called “expert caregivers” which basically were two employees who had to take any dropped shift and if they didn’t they would be unable to keep their title and obtain as many hours. This job title did not factor in the driving distances to each client’s case. Sometimes those cases were in other cities or an hour or more away from their home. One of the experts had to take a month off for family medical leave so there ended up being only on expert caregiver who got worn out very quickly. It turned out the main employees we saw were the experts because not many people wanted a shift where they had to work constantly and be worn out after the shift. (That tells you a lot about the work I had to take on during their absence). This remaining “expert” quit because she could not handle the work load on her own. This was when we received the call that Tim’s case was dropped. We had a caregiver that morning, then received the call and had no coverage that night. It was that fast.
We are now in the fourth week with no caregivers. This morning in bed, Tim informed me that most of the caregivers share the view that his care is my responsibility. Which made me feel great. All I was asking for was 4 hours to give my boys complete attention or catch up on the sleep I missed during the night as I wake up for either boys having nightmares- needing a drink- whatever…, or Tim needing to pee or needing to be rolled OR when I need to pee frequently due to being pregnant. I am not complaining but I feel a little disappointed in falling short of what I am expected to be doing as a wife/mother/caregiver. I am trying to not let their words bother me but I felt I was going above and beyond to keep our family functioning (I also couldn’t do this without help from Traci- I don’t pretend to do everything), but apparently I was not meeting everyone’s expectations. YAY ME!! I never try and state opinions I have of other people’s situations because I don’t know what they are going through. If I do, I usually put my foot in my mouth soon after because I spoke without thinking. One of the people who had this opinion is in a similar situation as me, a sick spouse but they have teenager kids not really young kids or pregnant and their spouse has the ability to eat and go to the bathroom mainly on their own, heck they can walk! So please watch what you say about other people because I doubt you know their entire story or why they are having problems.
So during this struggle to reinstate a caregiving company this past month, which the VA contracts out and pays for their services, we have experienced some really frustrating roadblocks. Because of the reason for the drop was “Tim’s case requires too much skill” we were given the opportunity for a skilled home nursing care to come in and take over the hours. We had a meeting with them in our home and the representative determined that she would NOT have ever sent a “caregiver” (they don’t require much more for the job other than a background check and drug test) but only a “skilled nurse”. She felt Tim would benefit from 24 hour nurse care. I wasn’t in complete agreement, but that sounded beautiful to me. She was going to tell them that 24 hour care was optimal but at the least she felt he needed 12-16 hours a day. So she left and took that to the VA. We waited a few days and the VA called us. They said Tim receives the most care hours out of any veteran in their jurisdiction and they are unable to give him more (we predicted this response). They could provide 3 days of 8 hours of coverage- the skilled nurses won’t come for only 2 hours at a time and it costs more to pay for a nurse over a caregiver. This is when they brought up two options which was scary to even talk about and I was mad that we were even talking about it. “If Tim requires that much care we should consider putting him in a nursing home. Somewhere close by so your family could visit.” WHAT!!!?!!? “There is also the option of starting Tim on hospice care, in the home and they will come in every day for a couple hours.” The VA did not feel Tim was at this point. Shoot, I agree!! If he was at this point, what would it be like when he was trached and using the feeding tube for nourishment?! We received a beautiful HFOT home August 2016 that is built for Tim’s needs. This means he would have better care in his home compared to a nursing facility. I never want to even consider putting Tim in a home. He is a young man as well as a young father. He doesn’t need a nursing home! So we sat on the options for a few days and decided we would do the 8 hours of nursing care 3 days a week then hospice care and I would cover what was not covered. It would be a bit more work on my part, but hey, that is my “responsibility”, right? We were about to call them when we received a call from the VA with another option.
They have been working “tirelessly” on Tim’s case and have found four other companies (3 are repeats that we have already worked with) that are willing to take on Tim’s old hours- 2 hours in the morning to get him out of bed and ready for the day and 2 at night to get him into bed, plus 3 hours during the week for out of home care. We were so happy to hear this. A representative from the VA needed to come out and reassess Tim’s needs to see if the nursing company was exaggerating and we could really accomplish Tim’s needs with simple caregivers or if Tim really does require more care. So we had the meeting with them last Tuesday. They felt caregivers would provide adequate care for Tim and were going to use TWO different companies to cover all the hours for Tim so their wouldn’t be a question of ability to cover Tim’s case. Awesome. We did say we preferred 3 of the companies over the 1 because we have had some issues with the office and their operations with one of the repeats, but please get them here ASAP! That was last Tuesday. We thought we would be receiving a call from the companies to do the initial assessment for Tim’s caseload and I was hoping we would have coverage by the weekend. We got a call yesterday, Monday, from the VA which they told us that they are still working to find coverage for Tim’s case. WHAT!?! We thought there were FOUR companies. We had an old caregiver friend come today to give me a break in the morning, which allowed me the time to write this and have a cup of coffee. I thank God for these friends.
Tim just finished his morning routine so hopefully he will call the VA soon and figure out what is going on.
And that is where we are. There is the option of taking whatever hours we can get then paying out of pocket for the rest of Tim’s care but we hoped we didn’t need to do this. I will try and keep you updated.