Caregiver Worries

Hi all,
It’s about 2.5 years since my partner had a subarachnoid hemorrhage at age 42. It has been such a significant life change. While adjusting to a new life, we continue to try and navigate the medical and therapy field. Within the past week, she was dismissed by yet another OT and PT due to lack of evidence to support progress to the insurance company. Also, the past month has been a struggle with learning of BP issues. Now we are learning of cardiology exams and renal ultrasounds. I have asked her neurologists if there is something more we can do and they seem to think we are doing all we can. I’m having a hard time accepting what the therapist are saying about 2.5 years out from the incident may mean things may not progress. Thanks for listening. Today was rough.

@Dcscout hard days suck. Being a frequent flyer to PT I know the skills they teach have to be practiced at home all the time - every day, several times a day or more depending on the skills being taught. Were you able to learn them along with her so you could be the reminder? I literally have a binder full of the different exercises so I can refer back to them, they started this for me after I ruptured as I couldn’t remember them correctly. PT is extremely hard work and we have to practice it or we lose it. Even though they have released her, don’t let her stop or give up.

I only know of one OT here in our county that works with adults and I was never able to get to see her as she works for our local hospital and those patients have priority. My Speech Therapist would talk to her often and have me do some different skill building sets which are also covered under ST. Again hard work all the time.

Having been a frequent flyer to PT and a couple go’s with ST, one of the things I learned is that many patients think they don’t have to practice at home. I heard one of my favorite PTs, a big bear of a man, fire a patient. He actually told the man he was fired. So a patient has to have motivation, tenacity and persistence.

For those that don’t know when a patient starts PT, ST or OT there’s a check list the therapist does in the beginning in the middle and at the end. Sometimes it just at the beginning and end of whatever length of time the therapist recommends. The list measures progress both observed by patient and therapist. There are tests they do for the different areas. These are not objective they are very subjective. If there’s not enough progress, the insurance company will not pay for any more sessions. It doesn’t matter what type of insurance one has.

The way it was explained to me is that for the three different types they cannot try to help someone who for what ever the reason it’s not working. With that being said these three types are not like having a mental health therapist where you can acknowledge they aren’t working for you and you just move to a different therapist until you find one that fits so to speak. As patients with the 3, we have to work with the ones that are available and some are better than others.

Do not let your partner give up! Make her do whatever they’ve taught her every day! For me it felt like I would slip backwards and that would make me try harder. Then it would feel like I wasn’t getting anywhere and then quite suddenly, I would be able to do it. I hope she has the “never give up” attitude.

All the best and please keep us informed on how she is doing. We are here for both of you!

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Hi Debra,

Sounds like a horribly rough day. Being a caregiver can be difficult, and sometimes you just have to accept what the insurance company (hence, the PT or OT) says.

Insurance companies suck.

But we’re in the unfortunate position of having to listen to them, often without recourse. It’s an uncomfortable position to be in, and it makes us (well, me at least, and I’m sure many others) just want to scream and throw a tantrum and find the bureaucrat who made the decision and show them what their judgment is causing. Make them meet the person over whom they have so much power, without ever having met that person.

I’ve been–and am–in your situation. I had a subarachnoid hemorrhage 20 years ago (doing okay now, more or less), and now I’m the caregiver for my disabled sister. The ruptured aneurysm seems so long ago, as if it was in another lifetime.

The caregiving, however, is immediate, and sometimes maddening. Almost two years ago my sister broke her leg, the result of one in a series of falls in which the injuries were progressively worse. She had surgery, and when time came to leave the hospital, she had to choose a nursing home for rehab. The insurance company refused the nursing home we chose, saying that the level of PT would be greater than she could handle. This decision by a doctor who did not examine her, had never even met her.

She ended up in a dark, depressing, understaffed place that wasn’t at all conducive to healing. I tried getting this nameless, faceless doctor’s verdict overturned, but it was made very clear that I was powerless.

I understand your frustration, Debra, and I wish I had a solution for you. Just know that you’re not alone. Sending good energy your way, to both you and your partner. We’ve settled into a mostly comfortable existence, and my hope for both of you is that you do the same.

Take care, and all my best,

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Hi DCSCout,

I am sending good vibes to you. some days are more challenging than other. try to enjoy those days that are good with her. She will get better with time. You are not alone!!

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