Therapy after subarachnoid hemhorrage

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My 58 year old sister had a massive subarachnoid hemorrhage last November 30th. She is currently in a step-down facility/nursing home. She had been at Spaulding in Cambridge. She was in a coma for more than six weeks. She cannot walk. Her right hand has some movement. Her right leg has some movement. She can move her head a bit. She is not swallowing well she is tube fed. She is not using a bedpan or the toilet. She can speak sometimes in a whisper.

Whenever she has therapy she cries and says it hurts. This is a right brain injury so her memory is intact but global knowledge is limited (inferencial, higher level thinking). My 86 year old mother is her primary caregiver and is by her side from 9-6 pm. Mom says she is too weak for more therapy than she is getting. I am wondering what would be the ideal amount of therapy for someone this sick. I am terrified that she is not getting enough therapy and that we need to fight for more as well as be tougher with my sister. I would also like to understand what therapy specifically she needs. Does anyone know of any resources to help us?

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Spaulding Rehab Hospital is one of the top Rehab Hospitals in the country so it looks like she is in good hands. I would speak to her team: occupational therapist, physical therapist and her physician on both the short and long term plan. I would also get her Neuro-Surgeon notes which will detail the severity of the SAH (Fisher scale) and whether there was a stroke (infarct). Also, it is great that your Mom is with her but does your Sister have a second advocate. It sounds like she has significant physical disabilities which would require heavy lifting. I did not suffer the extent as your Sister after my SAH but I will tell you that rehab is difficult. For every step, there is 2 step backwards but it is like training for an athletic event. Good luck. Stay Positive and take every Baby Step in improvement as a win.

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I am like 2Fight, ruptured Fisher Level 3 which is more than 1mm of blood in the subarachnoid space. I was in ICU for 26 days. I am one of the lucky ones.

I’m so sorry about your sister and the troubles you and your mother are dealing with. What happens when someone is bed ridden for so long is their muscles atrophy because they aren’t using them. It is very painful. Basically the muscles draw up or are rigidly straight. At the least, they will be doing Range of Motion exercises which forces the muscles to work. ROM can be painful as well, tell your sister to keep fighting. She needs to do her exercises all the time, even when the PT or PTA or the CNA isn’t doing them for her if she is able. There are other factors such as circulatory and respiratory issues that occur when someone isn’t moving. Back decades ago, I was a CNA going through college. ROM had to be done ideally every hour on every bed ridden patient. In the real world, it was every 2-3 hours. If a patient was alert and could follow directions, I would have them do things that could help themselves. We didn’t have a physical therapist in that facility. If they weren’t responsive, we had to move their arms, legs, neck, wrists, fingers, toes.

My doctor had these air wraps put around my lower legs in ICU for several weeks, I liked them as they took the pain out of my legs. They would inflate and deflate in a rhythmic pattern. They help with circulation and contraction of muscles. The ICU RNs told me most people don’t like them.

Here’s a paper about muscle atrophy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315632/

As 2Fight suggested, get a meeting with the rehab, they should have team meetings on a regular basis. They allot about 10-15 minutes per patient. It’s fast, so have notes ready.

In the US, there is a Medicare ombundsman who can help navigate long term care. In MA, this is their link https://www.mass.gov/service-details/ombudsman-programs

There may also be a Social Worker in the facility who would be a good person to connect with. Talk to the Physical Therapist in charge of her PT. I would start with them first. Don’t let them dismiss your concerns. You can probably get a little longer meeting with the SW than with the PT. But start with the PT first so you can really understand what your sister is going through and what needs to be done. The PT will have set both short and long term goals for her.

Good luck and keep us posted!

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Thank you so much for you response! She is not at Spaulding anymore but at another place with less staffing. My mom asked for a team meeting and it is happening tomorrow morning. My sister has a partner who is younger and able to do the heavy lifting. Thank you for the info about the Fisher Scale. That is new to me. I don’t think she had any secondary strokes but will check. I am very panicky that if we don’t do the right therapies or enough therapy that she will not improve. Thank you again for reaching out and good luck with your continued recovery.

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Thank you so much for your response! This is so valuable, especially since you were a CNA! I am going to dive into the muscle atrophy paper and pass along the links to the family as well as the atrophy paper and all your advice. They gave my sister botox injections a while back and that seemed to loosen her up quite a bit. I will keep you posted!

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CNAs are not medical experts by any measure…however when someone you love is in a continued care facility, it is paramount that visits be made on all shifts to ensure proper basic care…The facility may not like it, but pop in at different times. The other thing that I noticed with my parents, is the families that were really nice to the floor staff had their family members taken better care.

There are very important rules that long term care facilities have to follow, especially with Medicare. When both my parents were hospitalized, they were very concerned with decubitus ulcers (bedsores). Apparently if a patient develops one while in a facility, they can lose their funding and ability to have Medicare patients. Get to know the Medicare rules. I was able to get my mother released from rehab when I insisted on seeing the MD’s entry notes. It basically came down to release my mom or I will report you, your choice. With my Dad, it was food temperature so I suggested I would bring in my Thermapen (it’s a really nice instant read thermometer I got for grilling and see what temp his food was being served at, the issue was tFacilities get x amount for a set number of days and will try their best to get those days in. After the x days are met, the facility receives less money from Medicare so they often want the patient to go to another facility, or go home. The patient also has to meet the goals the facility has set. It’s all about business and I don’t fault them. Every facility has to operate in the black.

And here, I’m assuming your sister has been put on Medicare. I’m sorry about that. If she is on Medicare, learn all you can about their facility requirements.

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Hi!

She is not yet on Medicare. Another nightmare. She has insurance (Allways) but while at Spaulding she ran out of coverage at that level. But she was rejected by other facilities that were rated highly. She has a stage 4 bedsore from being in another facility prior to Spaulding and I keep mentioning lawsuit to my family and nobody wants to do it. Anyways, she also got c diff and couldn’t be moved from Spaulding because she was quarrentined. So we have three weeks I think of private paying at $2000 a day for care. They billed Allways for meds $2000 a day and I don’t know if they are covering that or not.

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If she is married or has a legal partner, they need to contact their local Adult Protective Services at the Department of Social Services. If she doesn’t, then someone representing her can go. See if APS can investigate the facility she received the bedsore at. They may also be able to help navigate Medicare.

Do not by any means sign her in to a facility, even an ER unless they sign their name and then put “for (insert sister’s legal name). No one wants to end up paying the bill. When I finished university, I went to work for a friend. The shop boss and his wife signed their son into the local ER. He was air lifted to another hospital. They ended up paying for the entire bill. When I was a Social Worker, we were taught to sign our name, our title and “for (insert name of Director of Social Services). Families don’t think about what they are signing, they just want their loved one taken care of.

Also you may want to contact the state Health and Human Services Department about the bed sore. The facility that caused it should be held financially accountable. Here it is considered abuse. They are preventable given simple appropriate care.

Has she been declared disabled? That was my first step, and it wasn’t easy. There was a law passed a long time ago that said people who have qualified for disability have to wait two years to qualify for Medicare there are few exceptions as in all things through the Federal government. Basically they want all avenues exhausted. Which means the family will have exhausted any savings. So start with one of her Senators and see if they can help expedite Medicare coverage. Look for the one that supports brain aneurysms, sorry I don’t remember the name. Also make sure her address is current with Social Security so she will get the Medicare notice. I never received mine in the mail. We found that out the hard way and had been paying my insurance provider for several months, and no they didn’t reimburse although they also refused to pay any doctor bills.

And tell your mom to take care of herself first. It’s hard to do but she doesn’t need the stress of sitting next to the bed. See if she will get active with her church or some other organization that will get her some physical exercise and support. I worry about her.

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All this is so valuable. I passed it along so we can start working on some of these suggestions. Thank you so much. I am very worried about my mom as well. It is too much for her.

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