Working with Home Health Agencies

All ALS patients at some point will have help of some kind come into their home. From physical therapists to home health aides, you open your doors to strangers and invite them in. In November at our quarterly appointment with the ALS clinic we discussed needing a couple pieces of equipment, a hoyer lift and a shower/commode chair with wheels. It seemed like such a simple request, but as I've found it never turns out that way.

We were assigned to a local home health agency to come out and evaluate our needs. Why do we go through these channels when you could just go purchase or borrow them from the loan closet? Well, we are hoping that Medicare will cover some of the cost of these two items and as wonderful as the loan closet is, you are limited by what is available. Medical equipment is a huge expense in the ALS world and these two items will likely be in the thousands of dollars. So, we do our best to work within the system.

This may come as a surprise to many of you, but having strangers in my home is stressful for me. I love the company of friends and family, but strangers coming in to "evaluate" our situation are much less welcome. This has caused me a great deal of stress over the past couple weeks. Many of the blogs I've read by ALS caregivers discuss the stress related to loss of privacy. This I can commensurate with and I know that it will not become less in the years to come, but more. So, I'm having to manage my stress level and try not to get angry.

Some of my stress is going to happen regardless of who walks through the front door, but I think there are things that are external and could be better controlled through the home health agency. I don't know how other agencies work so I can only address what has happened in our case. The phone calls started before Thanksgiving, with urgent pleas to see the patient as soon as possible. Why such an urgency, I don't know but they were anxious to get started right away. They let us know that the first appointment would be long and take a couple hours. They were a little off, it actually was about 2 1/2 hours. That's a long time for someone with limited energy.

In the first appointment they spent a considerable time reviewing and entering Patrick's medication into the computer. How this is related to the hoyer lift or shower/commode chair I'm not sure, but they were diligent about it. I thought it was interesting since the ALS clinic and home health agency are both part of the same system so why didn't they already have this information? We watched while all the medications were entered into the system. To be fair they did have some information in the system - some current and some not, but it was quite a bit of time spent gathering that piece together.

After this appointment the phone calls began, they called daily asking for more appointments - both physical therapists and occupational therapists. Even after I explained that we wouldn't be having appointments during the holidays. They kept calling. Additionally, I was very clear that morning appointments are not scheduled, only afternoon. This was a surprise to every person that called. To be honest, my stress and anger with the constant barrage of calls was starting to affect me. So, when I got a call from the original physical therapist who wanted to come out that day and mentioned two appointments already scheduled with another therapist in the following week that I knew nothing about (who makes appointments this way?) I lost it... yeah, I won't repeat the whole conversation, but it was likely not my finest hour, however it felt really good. I'm pretty sure he's afraid of me now.

So here is my list of recommendations to physical therapists, occupational therapists and others that enter my door:

• Knowing a couple people with ALS does NOT make you an expert.
• Disease progression is unique to the individual - it starts in different locations, has different symptoms and progresses at different speeds.
• Don't assume to know - even at clinic with ALS experts, they ask the patient about their challenges.
• Listen to the patient and caregiver. I don't expect you to be an ALS expert, but I do expect you to listen.
• ALS does not impact intelligence, don't patronize the patient because his speech is slow.
• Be realistic in goal setting. An ALS patient is not going to run a marathon in the next few months.
• Energy for an ALS patient is limited; so although you need to assess their physical patterns - do so with the understanding that they will become exhausted quickly. Adapt your usual routine, watch for exhaustion levels and listen to the caregiver/patient.
• We try to schedule only one activity a day. Not because we're lazy, but because that's about as much as Patrick can do comfortably, this way he doesn't overexert himself. So, don't try to schedule multiple appointments in one day.
• Time - As with everyone our time is valuable. Calling the same day and expecting to get an appointment that day, even hours later is NOT ok. Yes, we still have a life outside ALS!
• Work with the ALS Clinic staff, they are experts and can help with questions, concerns and recommendations.

I have to add this caveat, we have found some of the suggestions from these folks helpful. So it's not a complete waste of time. Whether its worth the aggravation is yet to be seen. If we get the equipment we need - I'll say yes.

I hope all is well with you and yours! Happy Holidays!