Vent! Arrggg!! Vent! How to be in two places at one time! Vent! Arrggg!! (adult, spouse)
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Last week my husband fell down a flight of stairs and hit his head on the tile floor and the wooden front door. He developed swelling and bleeding on the brain. Thankfully, it was not too serious (for that type of injury). He spent four days in intensive care and now has been on a general floor for another four days. He will be transferred to the hospital rehab floor as soon as he is completely stable (he is having difficulty with his sodium levels, his white blood cell count is high, plus a few other problems --- like he is getting weaker because he is not eating).
But, why am I venting? Arrggg-ing? Needless to say, I have already needed to take off of work from both my full time and my part time job plus cancel/ not schedule any "gigs" to earn extra money. Of course, my place is with my husband in the hospital and I really need to be there almost all day due problems caused by his previous brain damage and his confusion (explain it to the therapists, nurses, etc) remind him to ask for water, juice, etc and drink the liquids .
I am hoping that once he starts rehab in the hospital he will be able to be on his own a little more. One day this week I came early in the morning and then needed to leave for a few hours and returned in the late afternoon, I noticed a completely full meal tray and assumed that they had just brought the evening meal. Nope, it was the lunch tray and my husband had not even had one bite of the noon meal. They just removed the completely full tray and replaced it with the evening meal. How can someone possible recover from a serious injury if they aren't even eating? Sheesh! You would think that someone from the hospital would notice the full lunch tray at 1 PM or 2 PM or 3 PM or 4 PM and suggest to my husband that he should eat something.
The doctor said that for him to be placed in the hospital rehab program I needed to verify that after he was released, from rehab, he would be under continuous supervision at home 24 hours a day, seven days a week for a minimum of three weeks. The doctor was emphatic about that. He even asked me if I would be able to make sure that he was supervised if I needed to go to the doctor or if I had someone to buy groceries , go to the drug store or to run other errands like that.
Yikes! My vent is "how can they expect people to handle that?" I can barely pay the bills, with having a full time job, a part time job plus "extra gigs" (babysitting, etc) to earn extra money.
I mentioned my concerns to the hospital social worker and she rather flippantly said I should "just use my sick days" so that I can be home full time for a few weeks (this is after being with hubby almost full time in the hospital for a few weeks). Well, substitute teachers do not have sick days. If you do not work you do not get paid. I also work as a tutor, it is the same thing, if you do not work, you do not get paid (and, in addition, if I take off too many times even my long term clients will look for a different tutor). And, you certainly don't get paid if you don't babysit. Arrggg!!!
Vent! Vent! Vent!
I mentioned this problem to a dear friend, and their spouse overheard and chimed in "When we needed someone to stay with my dad we just paid an agency to send people 24/7". If I am a 63 year old adult who has to get date night babysitting jobs to have enough money to pay my bills, will I really have enough money just sitting around to pay an agency to come to my house 24/7?
This is so frustrating. Now, I may be able to do some juggling of schedules with our adult daughter, but the very, very best situation would be that I would be earning maybe 20% or 25% of my usual (already too low) income for five or six weeks (and maybe longer). Arrggg!!!! Vent! Arrggg!!!
How can I be in two places (work and home) at one time?
Last edited by germaine2626; 09-11-2015 at 08:27 PM..
You can't be in two places at once, of course. This is a tragedy, and your world has certainly been turned upside down. I'm sorry.
Since he cannot be alone safely (my bottom line is: Can the person respond effectively in an emergency when alone?), it doesn't sound like coming home and doing outpatient therapy at the hospital is a reasonable idea at this time.
Can/have you applied to Medicaid yet? It doesn't mean you have to sell the house or car. The spouse in the community still needs those things.
Is there Adult Day Care in the area? It sounds like your work schedule might be very scattered throughout the day, but this might help a bit.
Could, or should, he do rehab at a skilled nursing facility for even another month? Until he can be home alone? Sure, most people don't want to be away from home, but when accidents happen resulting in bad injury, sometimes you just have to.
Does your state pay for family members to care for relatives at home. Some do. Contact your local public health nurses, they often know what's available.
Does your husband qualify for home health services? Is there any insurance for that? Wise and creative scheduling can reduce the time a person is alone. Sometimes it is enough to make short periods of alone time doable?
Take a deep breath and step back a moment. Think about this.
The doctor is essentially saying that rehab is medically necessary but if you don't promise to provide 24 hr care after rehab, he's not going to order the rehab...
The doc is full of it. He is obligated to order the rehab if it is medically necessary. Please remind him that if he fails to order the rehab, his medical license is on the line. If you're not comfortable stating that, then simply ask "Does my husband need rehabilitation?" If yes, then "Ok, I'll speak with the social worker regarding his transfer". Just be firm, not argumentative.
Next, if you can find the time, you need to determine whether the rehab center the hospital is planning on transferring your husband to is acceptable (via unscheduled visit) and if it is not, find one that is acceptable and tell the hospital which rehab center you have chosen.
The rehab center should have a Home Care Coordinator. The HCC's job is to identify and arrange for the necessary help and equipment needed, prior to your husband's discharge. This is NOT the hospital's job nor is it the hospital's social worker's job.
It is likely you will have to figure out your husband's long term care needs. But not today and not next week.
Take a deep breath and step back a moment. Think about this.
The doctor is essentially saying that rehab is medically necessary but if you don't promise to provide 24 hr care after rehab, he's not going to order the rehab...
The doc is full of it. He is obligated to order the rehab if it is medically necessary. Please remind him that if he fails to order the rehab, his medical license is on the line. If you're not comfortable stating that, then simply ask "Does my husband need rehabilitation?" If yes, then "Ok, I'll speak with the social worker regarding his transfer". Just be firm, not argumentative.
Next, if you can find the time, you need to determine whether the rehab center the hospital is planning on transferring your husband to is acceptable (via unscheduled visit) and if it is not, find one that is acceptable and tell the hospital which rehab center you have chosen.
The rehab center should have a Home Care Coordinator. The HCC's job is to identify and arrange for the necessary help and equipment needed, prior to your husband's discharge. This is NOT the hospital's job nor is it the hospital's social worker's job.
It is likely you will have to figure out your husband's long term care needs. But not today and not next week.
Don't allow yourself to be bullied.
That seemed pretty odd to me, too. It would seem that either my husband qualified or he did not qualify for inpatient rehab. What the doctor seemed to be saying was that if my husband qualified for inpatient rehab at the hospital, at three hours of rehab a day, then he would be released so much earlier than if he was sent to some random "nursing home rehab" place where he would get maybe an hour of rehab a day but would stay much longer if he went to a nursing home. So perhaps, my husband would be over the first critical six weeks after his brain had swelled and bled (or something like that) if he went into a nursing home paid by Medicare.
A few years ago I checked on Medicaid and it appeared that my husband's social security disability was $100 over the guidelines, which I interpreted to mean that he would never qualify for it. (but I may have been wrong).
I am so confused about many of these things.
Thanks.
Last edited by germaine2626; 09-12-2015 at 07:44 AM..
You can't be in two places at once, of course. This is a tragedy, and your world has certainly been turned upside down. I'm sorry.
Since he cannot be alone safely (my bottom line is: Can the person respond effectively in an emergency when alone?), it doesn't sound like coming home and doing outpatient therapy at the hospital is a reasonable idea at this time.
Can/have you applied to Medicaid yet? It doesn't mean you have to sell the house or car. The spouse in the community still needs those things.
Is there Adult Day Care in the area? It sounds like your work schedule might be very scattered throughout the day, but this might help a bit.
Could, or should, he do rehab at a skilled nursing facility for even another month? Until he can be home alone? Sure, most people don't want to be away from home, but when accidents happen resulting in bad injury, sometimes you just have to.
Does your state pay for family members to care for relatives at home. Some do. Contact your local public health nurses, they often know what's available.
Does your husband qualify for home health services? Is there any insurance for that? Wise and creative scheduling can reduce the time a person is alone. Sometimes it is enough to make short periods of alone time doable?
Thank you. I will do more checking on those things.
I checked on adult care a few years ago. One place was something like everyday 10 AM to 2:00 PM (plus you had a pay a hefty fee for the transportation) and I usually leave for work at 6:45 AM and return between 4 and 6 PM (depends on my extra jobs). Another place was only afternoons and you provided your own transportation. and a third place was two days a week 11 AM to 3 PM and, again, you provided your own transportation. There were also numerous senior meal programs but they were only for 1 to 1 1/2 hours mid day and you had to pay for your meals (reduced cost and provide your own transportation). Those were all great ways to give caregivers a break but not enough to allow a caregiver to work.
When I checked a few years ago my state did not pay for family members to care for relatives, but I can check again.
Nope, no insurance for home health care.
A few years ago I checked on Medicaid and it appeared that my husband's social security disability was $100 over the guidelines, which I interpreted to mean that he would never qualify for it. (but I may have been wrong).
This stuff is so confusing.
Last edited by germaine2626; 09-12-2015 at 07:58 AM..
A few years ago I checked on Medicaid and it appeared that my husband's social security disability was $100 over the guidelines, which I interpreted to mean that he would never qualify for it. (but I may have been wrong).
If he has SSDI, does he have Medicare? If so, Medicare has a generous home health benefit. It is standard across states, unlike Medicaid which can differ from state to state.
Sorting through benefits is a struggle. Don't feel bad about it not making sense.
I would talk to your employer and see if you can work extra now in order to take off time when your husband is discharged.
It'll be much easier to schedule a sitter if you can also set up the work schedule for four weeks in advance.
It doesn't sound like he's under Medicare. They would send a home health agency after discharge from rehab.
The doctor probably wants him to be in a hospital program in the event there are complications with the brain injury.
Most skilled nursing facilities don't have a specialized therapy department for strokes, Parkinson's, and brain injury.
In a normal job that may work (working extra now and asking off later), so that is a great suggestion, but I work full time as a substitute teacher plus work as a private tutor immediately after school. I can't work now as I need to be in the hospital during the regular day time work hours of the staff (therapists, social workers, etc). I can't work later because I have to be home with my husband (unless my adult daughter -who also does not have paid sick days - takes off from her job to stay with him). She may be able to arrange her work schedule so that she will be home so I can do some of my tutoring jobs and maybe workone day a week. But, since she doesn't have paid sick days that would mean that her paycheck would be less.
I do not have sick days on my job. If I do not work I do not get paid.
He does have Medicare, but my understanding was thatifhe qualified it would be something like having someone help him take a shower twice per week for one hour each time and maybe someone else help with home physical therapy twice per week for an hour each time.
Even if he qualified for home health care I believe that it would only be one or two or three hours maybe twice or three times per week. That would not be enough for a spouse to leave for eight to nine hours, or more go to work. But, I will definitely check. I did not think that Medicare paid for home health care so that I spouse could go to work but I may be wrong.
Thanks for your suggestions.
Last edited by germaine2626; 09-12-2015 at 09:48 AM..
If he has SSDI, does he have Medicare? If so, Medicare has a generous home health benefit. It is standard across states, unlike Medicaid which can differ from state to state.
Sorting through benefits is a struggle. Don't feel bad about it not making sense.
Thank you for suggesting that. When things like this happened to elderly friends/relatives it really did not seem like a "generous home health care benefit" just one or two hours here and there for a few weeks and it seemed like it was designed to more to help the elderly who returned home after surgery or and injury and lived alone, obviously very helpful, but certainly not something that would allow a caregiver to return to work.
But, I will check it out. Thank you.
Last edited by germaine2626; 09-12-2015 at 09:52 AM..
The case worker at the hospital may refer you to a home health agency, and they will send a nurse to do an initial assessment for Medicare. I don't think they'll send someone just to be a companion, but this looks like a situation where they can send in a physical therapist, occupational therapist, nurse, and home health aide. You might be able to schedule these twice weekly hourly visits by the therapists as a block to ensure your husband isn't alone on those days. The nurse will come periodically to do a follow-up assessment every two or four weeks. I have no idea about a home health aide as I declined their offer to provide one.
I would call an agency nearby and see what you can expect in services when the time comes.
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If I am a 63 year old adult who has to get date night babysitting jobs to have enough money to pay my bills, will I really have enough money just sitting around to pay an agency to come to my house 24/7?
