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I am the primary caregiver for my parents (92 and 90). My father has Parkinson's and is being released from the hospital after a bout of severe constipation and a possible volvulus (twisting/flopping of colon) for which a rectal tube was inserted. He has not been out of bed from 6 days. We have had a hospital bed delivered to the home and he has a walker. I have a commode ready for the bedside and he also has pull-up incontinence "underwear." I've been told by the hospital social worker that he should quality for an aide 5 days a week for about 3 hours a day. My mother who is in better shape than my father would be with him all day, but is not really equipped to help him a lot. I also work full time and have requested a week off to get them settled in. In short, I'm terrified. How do I help them? My mom is unable to be a true caregiver and tetters from depressed to agitated to nearly non-functional cognitively. I live with them, have no spouse, children or siblings. I did not as for him to be released to a nursing home/rehab as no visitors are allowed and it would disorient and disturb him greatly.
Thank you for any suggestions! I'm overwhelmed.
Tina

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Imho, their care, especially for your father, may be more than you can handle.
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Tina..say yes to the adviced help. The hosp. will not release him to go home till after rehab. If that is successful and you get the level of help you need and you want it to happen...his stay my be....and back in hosp. this back and forth will be "short term" he is not strong enough to rehab eventually. Your mom will always be a caregiver (if she is) and she can with a lot of help. If he is a Vet. with a honerable discharge..there is aid and attendance. Your mom can just be there or she will "hurt herself".
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You are going to have to be prepared with coverage for the periods of time the home health aids are not in the home. If finances allow, start lining up hiring someone to be there when you are out of the house. If you know someone personally who does this sort of thing, it will be cheaper than using an agency. Since you work FT, you know you won't be available at least 8 hours a day, so create a schedule where everyone overlaps each other on arrival/departure.
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Get the rehab! Yes he will be quarantined for 2 weeks and you will not be able to see him but this is way too much for someone to handle. He has Parkinson's and he will not improve - it's a steady decline. You sound like me as far as being alone - no spouse or children. My 93 year old mother who lived with me fell and had a stroke. They wanted to release her to come "home". I also work F/T. They made it sound like she was getting better by leaps and bounds and was still strong. They failed to tell me just how disoriented she was. After finally being able to talk to her over the phone she has no clue what is going one and only wanted me to come get her. After the nurse said she would need someone 24/7 I had her transported to a SNF. She is getting much needed therapy but yes we can't see her and it's tough. But what good would it do me to have to watch her as I could probably only take a few months off with pay per FMLA - and the expense at having at home caregivers. Plus she has coverage for 100 days in skilled nursing. After that it will be Assisted Living if she is able - if not a nursing home. She's lived with me for 3 years, is very narcissistic and I just can't do it anymore. I feel for her but she's getting great care. You need to find a place to place him IMO.
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If your dad hasn't left the hospital yet, call the hospital discharge nurse or Social Worker & have him placed in Rehab instead. They can call the doctor to get the order or advise you to do so. He is going to require 24 hour care even after you go back to work & when you go back to work W/O coverage of care for you might be seen as negligent. If he is coming home with the rectal tube, have you been taught how to care for it. Do you know how to prevent constipation, signs & symptoms of volvulus. He should qualify for PT since he has been in bed for 6 days. Why was he not gotten out of bed these last couple of days with the help of PT? If he does go to Rehab does your mom have the ability to safely stay at home while you're at work? PLEASE act ASAP to provide the care that your dad requires before he comes home. Be their voice! Support is here in this blog for you.
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Tina, I've read over your previous posts. You were already at the end of your rope, and this was since before this current hospitalization. It will be much more difficult now, as your father is bedridden. How do you take care of a rectal tube?

If the hospital SW thinks that your father "should qualify for an aide 5 days a week for about 3 hours a day," is that a definite? And how would just 3 hours/day be enough when you work? What are your parents' finances? Can they afford additional help? YOU shouldn't be paying for their needs, btw, unless you are using their funds.

You have been with them for 18 months now, and have a house in another state. You do realize that by agreeing to have your father come home now, that you will be extending your stay with your parents indefinitely?

And you also must realize that they need fulltime help at this point. What are their plans for that, or haven't they made any at all? Do you foresee yourself giving up your job to be their 24/7/365 caretaker? Because that is where I see this is headed, unless you make some major changes.

Do you have their HCPOA? Durable POA?
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In the same similar situation I had to make a decision to hire cna's for daytime and sitters for the evening. Your mom will decline fast trying to care for him. I used Concierage Home Health and was extremely pleased. The evening sitters came from our church. Put the word out that you need help. They both are at a fragile age and need some kind and loving care. Yes, it cost a small fortune but every penny was worth it. My parents have minimal income. We did get some assistance from the VA. I hope this helps you. There is no way you can work and do all this. Have you considered home hospice? They can provide lots of assistance even if your dad has no ebd of life diagnosis. We used Vitas Hospice and wished I had started earlier.
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I just struggled with this exact problem. Mom fell and broke her hip and dad is on his own at the care facility. The no visitor rule made me second guess sending her but my dad absolutely cannot care for her and I have to work. She fought hard for the first several days begging me to come get her but she needs that time to get stronger and learn the correct ways to get up, sit, etc.. with her hip that I could have not taught her. Easy to say but much harder to live with I know. Despite it all best decision to have her there.
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You can still choose rehab. There is a 30-day window for admission after discharge from the hospital. Otherwise, I hope you find a good home health agency. Our dear federal government, in the name of improving the value of services, has cut way back on home health services. You will most likely only get basics. If that happens, the squeaky wheel gets the grease! If you still need help after they are "done", make yourself be known!
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Mysteryshopper Jun 2020
Yes - the minimum will be provided in-home and you will be extremely lucky if you even get that.     The staff who talk a good game about all the help you'll get are not there when you are now at home with your LO and you are alone/struggling.  After not getting anywhere near the amount of in-home help that I needed for someone, the helpers didn't even show up for the last few visits.  When I complained, I was told that services had ended and my LO had been discharged from the in-home program.  What???  I was also told that I had been notified of this.    What I did have was a schedule which had been filled out by the caregivers themselves - in their writing - and then they didn't fulfill it.  These were agency caregivers, but were affiliated with a nationally-recognized hospital.   Just be careful on what is promised vs what is actually needed and compare all of that with what you can do entirely on your own if no one shows up.   Be realistic.
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In bed for 6 days means he's probably bedridden, and he probably won't even be able to get up at all; you should have chosen rehab.

You can always call 911 and get him back to the hospital. He may end up in a nursing home, or you will have to quit your job to care for him 24/7.
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Allow the aide to help here. Start with this. Also if you feel he needs to go into a Home, start with the doctor for a screening and go from there, angel.
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Although I understand your concerns about rehab visitor rules, I truly think you are making a mistake in not sending him for rehab.

Rehab would allow him to build up his strength and give you a bit more of a reprieve. It would also be a trial run for when you are unable to provide care.

It sounds like Mum is going to be incapacitated by the thought, let alone the actions of providing any form of care. If you are at work 8 hours a day and care is there for 3, who is going to prepare Dad's meals, feed him s needed, change him etc while you are away?
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Well, this is certainly going to be a challenge so I can see why you're worried. I think you will need more help. 3 hours a day is great BUT probably not enough, especially since you don't think your mom will be able to really do much for him.

Call a healthcare aide company and line someone up. Nice that you'll be able to be home for the first week to try to help with the adjustment period.

If it ends up to be way too much to handle at home, you might need to go the nursing home route, even if it will not be your dad's favorite option. Your sanity counts too so you need to make sure he can be safely taken care of and that you and your mom are not put under too much pressure.

Good luck!
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MaryBee Jun 2020
Good answer however it is easier to get into the rehab unit directly from the hospital.
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