Guest Post: My spouse had a stroke, now what? (Part 4)

Editor’s note: Today’s post comes from stroke spouse Melia Wilkinson. You can find the earlier parts here:

— Thanks, Bill

Moving to an acute therapy facility (a.k.a. therapy-centric care versus medicine-centric care)

After neuro-critical care at the hospital, you’ll move on to rehab. It’s a complete change from medicine-centric care to therapy-centric care. In our case, we went to a swing bed rehab facility for about three months and then back to acute rehab (in his original hospital) for three additional weeks. This path is VERY different for everyone, so I will speak in general terms about therapy. Please understand that there is no right or wrong.

Meet the therapy team

When you arrive at a therapy facility, they will first get benchmarks and find out what types of therapy are needed. Your therapy team may consist of each of the following: a physical therapist, a speech therapist, an occupational therapist and a recreation therapist (we had all four).

A physical therapist deals primarily with the lower half of the body and activities like balance and walking. If given the choice, you want a NEURO PT. An Occupational Therapist is someone who works two-fold: Upper body (arm movement) but also basic care, like dressing, showering, etc. Speech therapy is fairly straightforward, but it will also include swallowing therapy and learning to eat again. The recreation therapist may seem sort of “fluffy” to start, but some of my husband’s most emotional sessions were when he played music with other patients, when they brought in a dog for therapy, or when they took us on an outing. Don’t discount this therapy!

The best therapy experience we had was when the therapist team worked as a unit and had someone monitoring overall progress and goals. The team knew their objectives, talked to each other, and had goals set each week. This is not the norm, though, and you may need to talk with each person, becoming the point person. Don’t be afraid to ask why they are doing something, what the goal is, or how it dovetails with another therapy.

The best therapy experience we had was when the therapist team worked as a unit and had someone monitoring overall progress and goals. -- @MeliaWilkinson #stroke #PT #OT #SpeechTherapy #RecTherapy Click To Tweet

Focus on neurorehabilitation

There will, more than likely, be dramatic improvements over the months to come. Where things are now is not where they will be in three months (or in three years). As your therapists start moving in, it’s important to think about where you want to be when you leave their care. For some people, having a loved one be able to dress themselves may be critical. For me, learning some basic techniques for self-care was a good thing, but that’s not all I wanted. I was FAR more interested in return and neuro rehab. That is, getting the brain to kick in and reconnect. Yes, some of these basic routines like dressing and so on do help stimulate the brain, but there are neuro therapies focused specifically on motor recovery, and that’s what I wanted more than anything.

On that note, just something to tuck away: While many PTs will have a neurological background, most of the OTs that we encountered didn’t. They have amazing skills and can teach your loved one some great techniques, but they may not be up to speed on neuro therapies for the upper body. I was very lucky in that the rehab facility we went to had a director who worked with all the therapists, even those without the neuro training, to insure my husband got more than just the overly simplified OT therapies that are currently out there. She used electrical stimulation in combined OT and PT sessions to try engaging the arm, as well as lots of brain engagement exercises. I feel very strongly that arm motor therapy could be greatly improved. Again, it’s no one’s fault. Everyone works very hard at what they do. It’s just not addressed the same way as we do lower body therapy, and I think that’s a shame. If you’re up for the fight, demand it! Ask about different options for recovery of arm function, such as electrical stimulation and other techniques. You may even request that half of the OT sessions be directly related to improving arm and hand function.

Balancing therapy with getting time to heal

I think the interesting part of this next stage is the balance between healing and therapy. When we first arrived at the care facility, my husband was a “hot mess”. He had just had the craniotomy, so his head had a big dent. One nurse came in on her first day with us, looked at my husband, and said “What the heck happened to him?” He was on a feeding tube, his vision was almost nonexistent, he couldn’t eat solids, he couldn’t stay awake for more than about an hour, and he was very confused. He also came in and out of full lucidity and overestimated his own abilities. Mostly, what he wanted, was to sleep. Everything was complicated, as he had night terrors and often didn’t fall asleep until 3:00 or 4:00 in the morning. He also needed to heal. As his wife, I felt it was my duty to try to balance it all. There were some days when the therapists would come in bravely, and I would just look at them and shake my head, saying we would have to reschedule for the afternoon. I hated doing this, we were in therapy for just a finite time. Once gone, it’s so much harder to get to and from and into therapy, and FAR fewer sessions will be covered by insurance. But you also have to look out for the well being of your loved one, and sometimes that means more sleep.

Seeking stroke rehabilitation knowledge

Depending on where you are for rehab, be aware that the doctors may not be as well versed in stroke recovery. They often do rounds, check in, etc., but their depth of knowledge on stroke recovery may be very thin. I often referred back to earlier doctors, or even consulted the Internet, to get help and then stomped into the doctor’s office and demanded some new protocol. This is a place where it’s worth doing your homework and knowing what’s next and what to expect. These doctors are NOT always stroke experts. The more you know, the more you can ask for better care.

On the other hand, the nurses and the CNAs (Certified Nursing Assistant)… Oh, my goodness! They will be your angels. Get to know them. Talk to them. They will be the ones that get you through the bad days. They will be the ones that know all the “tricks”. One night nurse figured out the right drug cocktail to get my husband to finally sleep. She wrote it on a sticky note and told the doctor what to order. They will take care of the accidents. They will tend to your loved one, and they will truly be your guiding lights.

The nurses and the CNAs (Certified Nursing Assistant)... Oh, my goodness! They will be your angels. Get to know them. Talk to them. They will be the ones that get you through the bad days. -- @MeliaWilkinson #stroke #rehab #nurses Click To Tweet

Developing rehab routine

I spent a lot of time at the rehab facility, but that’s not always possible for everyone. With that in mind, I would refer to my earlier suggestion about having pictures, etc., on the walls. I still did this, and I know people read them and refer to the information, frequently. At this point, it’s also good to have photos, pictures, cards on the wall to help make your loved one feel less alone and more connected.

Once therapy is under way, things will fall into a rhythm. For the first time, you may feel a little bit of relief in a regular-ish schedule. You’ll get to know the faces, and you’ll see progress. When we started out, my husband couldn’t even sit up straight. At all. It was very depressing. Over time, though, we went through sitting up straight, to sitting without assistance, to standing for mere seconds, to minutes, to taking first steps in the parallel bars with maximal assistance, to walking up the hallway with a hemi-walker. I would not have believed if you had asked me in those first days that we would see such progress.

Know your strengths, weaknesses, and opportunities

Professionally, my husband was a computer programmer. When they first sat him in front of a keyboard, he couldn’t find the letter “A”. He just didn’t know where it was. Part of this was that he had very little vision on the left side. Well, you might say, “why didn’t he turn his head?” So, this is the next thing that I had never heard of but can be common after stroke: Left side or hemi neglect. My husband’s brain had forgotten (or stopped attending to) the “left” side of the world. He never thought to turn his head to the left which was based on the perception of his brain in relation to his physical space. A clear example of this was when I gave him a piece of pie. He ate exactly half. The left half was completely untouched. When told him to turn his head, he found it and said, “Hey, more pie! The best part of left side neglect.” The good news is that you can retrain the brain (to some extent). The bad news is you must work really, really hard at it. To this day, when he’s tired, I often have to say, “Look to the left…” But now he can, and that’s the important thing.

He ate exactly half (of a pie slice). The left half was completely untouched. When told him to turn his head, he found it and said, “Hey, more pie! The best part of left side neglect.” -- @MeliaWilkinson #stroke Click To Tweet

One other thing I want to talk about is animal therapy. I don’t know how common it is, but both of our facilities had it. IF your loved one is an “animal person”, I cannot tell you the comfort this can bring. From playing fetch to just a warm cuddle in bed, advocate for animal visits as a different form of therapy. Don’t pass it by. Make sure you’re in the rotation! If it’s not something that your facility offers, ask if it’s possible to bring in a therapy dog. There are groups such as Pet Partners that can match rehab facilities with therapy animals. The first time I ever saw my husband act like his old self was when a dog came into the room for the first time. It was everything.

The first time I ever saw my husband act like his old self was when a dog came into the room for the first time. It was everything. -- @MeliaWilkinson #stroke #PetTherapy #AnimalTherapy Click To Tweet

Special considerations

A couple of quick notes that were specific to our recovery but won’t apply to everyone… First, just after the craniotomy, your spouse may look normal. That’s because the swelling is filling in the spot where they’ve taken off the skull. As the brain’s swelling decreases (a good thing), it starts to look… well, bizarre. My husband said that his head looked like a used eraser. It’s exactly that. At some point (about 6-8 weeks) after the original surgery, you will go back in and the neurologist will re-attach the piece of skull removed in surgery. It sounds super scary, but this is the easiest part of everything. One other note, and nobody knows why, but the brain seems to work better once the skull is reattached. It’s just a thing. Sure enough, after the second surgery, my husband had a HUGE improvement in his walking skills and in general cognition.

The second thing I want to address is the feeding tube. As time goes by, they will introduce increasingly solid foods to your loved one. Hopefully, they will move forward and eventually get to solids. Here’s the Catch-22. They won’t take out the feeding tube until your loved ones is gaining weight back. BUT, if the feeding tube is in, they won’t gain weight as their appetite is decreased. We got to the point where it was clear he needed to be off it, but the dietician wasn’t quite on board. I did my research. Talked to several doctors outside the hospital and waited. She went on vacation, and I asked my favorite doctor if he thought we could take out the feeding tube. He said, “Sure, why not?” And out it came. I don’t think the dietician was necessarily wrong, but I also knew that Kerry was eating well and just didn’t need it.

Come back on May 6 for Part 5


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