My brother is in acute care hospital with trach and ventilator. He wants to go home, they want to send him to rehab. Any suggestions?
My brother is 66 yo and in acute care facility for nearly 4 months, as a result of severe bladder infection that went sepsis. It went undetected as he was cut off from most all to avoid COVID. He survived nearly fatal childhood polio, now has post polio syndrome. His mobility is similar to Lou Gehrigs. His lungs are the main issue, he has been on/off ventilator, now back on with trach. He has feeding tube, catheter and also bowel movement issue due to immobility. He nearly died numerous times. They plan to send him to rehab for further therapy. Our goal is to get him to a point that vent is only needed at bedtime and have therapy to swallow. He is not in pain. He is competent and I remind him I am there to facilitate his wishes. He has been denied so much in his life due to effects of polio but not once complained or shown a trace of bitterness. The only thing he has asked me for is a cup of coffee and a real bath. My 2 younger brothers are of no help, rarely visit him. It's sad how his friends have stayed away. I live 3 hours away but am committed to help him have some quality of life. If rehab can't improve his function, I will take him home or to live with me. I was planning to go back to work but this has stopped that cold. He only has Medicare, was denied Medicaid due to "assets" which is a life insurance policy with cash in value. He lives in a home I own, with another brother, and gets my late dad's social security of about $850. Can anyone suggest home services that may be available for someone with his numerous issues? I want to hive him respect and dignity. He is totally dependent on nurses he does not know cleaning every body function which does not allow him basic modesty. I love him so much and if nothing can be improved will discuss hospice care with him. Prayers for my sweet brother greatly appreciated.
I suppose your role as his advocate is about helping him weigh up his options & then support him to make the choices he can, that fit his values & fit within what is possible. This includes what you can realistically do too.
I would ask him what 'home' means to him now. Familiar environment? Feeling physical comfortable? Feeling peaceful?
Many people want 'home' but want the 'concept' of home, the feeling - not the actual building.
If home IS possible, do the pros outweigh the cons?
If not, aim to bring as much 'home' to him as possible. Some of his own belingings may help, own clothes rather than hospital gowns. Photos on the wall, music or dvds he likes. Small things maybe. But possible.
I have met families that insisted on home, over hospice house type accomodation. This is a completely valid choice & it is done with best intentions to meet the patient's wishes.
The reality however can be different to expectations, as 'home' may include a hospital bed on the ground floor, lots of equipment, care staff coming & going but insufficient staff at times resulting in great stress on family.
Whatever you both choose, I wish you the very best.
Medicaid - if the insurance policy is what is keeping him from getting Medicaid than he needs to cash it in. Then he takes that money and buys a prepaid funeral. The only ones that benefit from the policy is the beneficiaries. They are not obligated to pay any of his bills or funeral expenses. If he dies in debt and there is no money, then the debtors will just have to write the debt off. No one is responsible for his debts.
I think its going to be found that ur brother will need 24/7 care and will need to go to Longterm care with Medicaid footing the bill and his SS helping to offset the cost. His health problems I would not try to care for in a home situation.
Your brother must have contracted polio at an early age. I had received the vaccine not long after he was born.
When he does come home, and if he's dysphagic, you'll have to prepare foods either in a specific way, or eliminate some of them entirely. I received handouts from the speech therapist and pathologist itemizing which foods had to be either "mechanically soft" or pureed.
7. Back to the feeding: my father was strictly NPO, on Nestle's ProBalance, administered every 4 hours through a feeding tube. That changed my own plans significantly. It was a 7 and 11 am, feeding, followed by 3 pm and 7 pm, then a bolus feeding at 1 am.
A hospital bed was provided, with the stands for the tube feeding. I changed my schedule, but after a few months was exhausted from lack of decent sleep. I overslept one time and missed the first feeding. (Nurses had told me thought that apple juice can clear the feeding tube, and it did.)
Maintenance of a feeding tube is also something you'll need to learn. It wasn't as hard as I thought though.
That's also something to be considered when your brother comes home, probably with you as I suspect he'll need 24/7 support if he still has the feeding tube.
8. This is where I really had problems finding at home care support. Eventually, after the feeding tube was removed, and dysphagia was again a problem years later, we reached the point of needing at home assistance. Companies I interviewed claimed they had staffers who knew how to puree food and were dysphagia knowledgeable, but once those staffers came out, I learned that one of the team lied completely and had no knowledge whatsoever of the dysphagic condition.
9. Home care: I was very fortunate to have chosen a home care team affiliated with one of the top hospitals; they were far and above more helpful, knowledgeable, and compassionate than anyone else I ever hired, but they also were in the area of highly rated medical facilities.
When your brother is ready for home care, consider teaching hospitals and find out if they offer home care services.
I'm sure there's more, but I have a feeling I need to step back and reassess everything, as I'm sure I've missed something.
I do want to offer support for your concerns and plans. You're undertaking a challenging role, and I respect and applaud you for that decision. And consider how to manage if your brother does come to live with you; your whole life will change, and you'll have to create and work through some adaptations.
Another errata: I just checked your profile and see that you're no stranger to caregiving. I apologize for not taking that step first.
I've had experience with vents and feeding tubes, so I'll share that aspect.
1. I don't want to discourage you about vent use only at bedtime, but to the best of my knowledge, that's not possible. Were you thinking instead of oxygen use at night only? Once someone needs a vent, certain progress must be made before switching to oxygen at night only.
In my experience, vents need to be maintained (during critical recovery periods) by trained medical personnel, on a 24/7 basis, and a trach also needs professional attention. (My experience was in 2002-2003, so the need for 24/7 attention might have changed.)
This is definitely something to raise and discuss with a speech pathologist and one of the staff physicians.
I did do a lot of research and learned that some children have trachs and their parents have learned how to manage trach care. So apparently there are possibilities of parents or relatives learning these techniques.
2. My father spent more than a few months in rehab after discharge from the long-term care hospitals. He was then treated in rehab by a speech therapist as well as a respiratory therapist. Eventually the trach was removed, but he was still NPO for some months before the feeding tube could be removed.
3. I had great difficulty finding rehab with the speech pros required. After interviewing with several, I finally found one in a city with top notch medical institutions. There was also a teaching hospital and another top notch nonprofit hospital, through which I eventually found a great, also superior, home care team. That was far more challenging than anything that followed over the course of my father's life.
The hospital and the highly qualified and dedicated professionals made all the difference. But they're in a different class of experience, and not as readily available (in my experience) as are the sometimes prolific home care franchised agencies.
4. Rehab can bring your brother much closer to a more normal life, as he'll get speech therapy, PT and OT, but it will depend on the facility and its range of staffers. Create a checklist, ask for rehab facility suggestions from the acute care facility staff, and start calling, focusing heavily on staff with speech care quals.
I did a lot of online research and calling before narrowing down to rehab facilities which really had the requisite staff. I found that some of them stretched the truth of what they offered and really did NOT have the respiratory staff needed. They were dishonest; beware of that.
Medilodge is one rehab you might investigate. In our area, it was a top notch chain, but eventually each different facility focused on medical specialties. One focused only on patients with respiratory needs. Another focused on knee surgery recovery.
5. I debated addressing this, but I think you should be prepared for healing complications b/c of the childhood polio and the current restrictions now manifesting. I don't wish to discourage you, but only to prepare you as you seem to be a very forward thinking, analytical person who can address these issues and plan for them.
A good speech pathologist can offer great insights. It may be that your father will be restricted in swallowing b/c of long term vent or trach use, but be persistent. I had to when the home speech therapist was ready to give up. That's when I learned about the Shaker exercises, to strengthen swallowing muscles. These were what really allowed my father to progress and eventually shed the feeding tube and begin to eat real food.
You can learn more about them here:
https://napacenter.org/swallow-strengthening-exercises/
(Running out of space)