Home nursing care seems to be the only option - any advice?

[grahambda]

Sadly my 75-year-old father is suffering from end-stage Parkinsons, just a few years ago he and my mother would play golf 3-4 times a week, now he can't speak, feed or dress and falls constantly. This is putting a tremendous toll on my mother (as the sole caregiver) and my husband and I can only help periodically due to our jobs which are out of the State. We have tried the home care service providers but none of the care providers they have sent has been experienced enough to cope. None have had any experience dealing with PD patients and are unable to help when he falls - it seems the hourly rates they pay their employees are so low they cannot attract the level of caregiver he needs, we have been paying approx $25.00 per hour but the caregivers rarely receive more than $15.00 and they have to pay for their own transportation to and from their patients).
We have searched for vacancies at full time living facilities, but none so far have available beds and most have a waiting list of more than year, we started our search within 10 miles of TV, so that my mother could visit him on a regular basis, but we have now have had to expand that search to a 50-mile radius, again no vacancies. The two that did have vacancies have terribly reviews and one was being sued by the families of the patients!
We have turned our efforts to try and find and hire directly a caregiver that could live out and provide up to 30 hours a week of caring for him in his home with occasionally spending the night. But despite contacting a few via recruitment agencies none have responded. In addition to the obvious concern over my Fathers situation, we worry constantly about the health and well being of my mother (both emotionally and physically) and she may not be able to copy very much longer.
I would welcome any advice and recommendations to try and find a caregiver for him and any thoughts on long term care facilities that may have a vacancy soon. You can private message me also. Thank you in advance for reading this post.

[rtharner]

I can relate to your heartfelt situation. I have no solution, but with the high visibility of this board, I am hoping you get lots of good responses.

[davem4616]

it's not an easy path that you are traveling on, especially being out of state....I'm on a similar path, albeit searching for the right memory care facility....24x7 care giving is draining

consider giving "A Place For Mom" a call...gender doesn't matter....you should be able to google their number (for central Florida/The Villages). They've already done a lot of the leg work, and seem to have a good handle on what's available in the local area...it won't cost you anything, as they get a cut from the facility for the referral once you make a decision.....they are not pushy


They were able to provide me with a couple of in home service companies, and a number of facilities in and around The Villages to check out

moving a loved one into a nursing home because they can no longer be cared for at home pulls at the heart...

good luck and God bless

[Taltarzac725]

Palliative hospice could help but I believe you need a physician to sign off on getting them to come in. I had heard they have caregivers who come into the home as well as volunteers, a registered nurse, a chaplain, and a social worker.

The Benefits of Palliative Care | What You Need to Know | ZaggoCare (https://zaggocare.org/benefits-palliative-care/?utm_source=google&utm_medium=ernst-media-cpc&gclid=EAIaIQobChMIl6i0kN2O9gIVrRmtBh2fnQBzEAAYAyAA EgK9t_D_BwE)

I know nothing about ZaggoCare but am familiar with Vitas.


VITAS Hospice Office in The Villages | Lake & Sumter Counties | VITAS | VITAS Healthcare (https://www.vitas.com/locations-search/lake-and-sumter-counties/the-villages-hospice-office?utm_source=google&utm_medium=locallisting&utm_content=SAT2501&y_source=1_MTMxNjE1NzMtNzE1LWxvY2F0aW9uLndlYnNpdGU %3D)

Hospice Care at Home | VITAS Healthcare (https://www.vitas.com/care-services/hospice-care-at-home)

[xkeowner]

We had a very recent experience with VITAS and while it was mostly very positive, I don't believe they will be the answer to your needs. We then moved on to Cornerstone and received the support we badly needed. We had the support we needed in less than 48 hours. Hope they can do the same for you. Sorry, but we are traveling and I don't have the phone number to give you.

[Taltarzac725]

Palliative Care : Cornerstone Hospice and Palliative Care (https://cornerstonehospice.org/palliative-care/)

I have had a little interaction with Cornerstone and they were professional. This was concerning the last few hours of a close relative. Vitas has been better for our needs but these needs will, of course, differ a great deal from family-to-family. We also need to bring in Right at Home workers. Home | Right at Home (https://www.rightathome.net/?st-t=google_&vt-k=right+at+home&vt-mt=e&gclsrc=aw.ds&&gclid=EAIaIQobChMI27vjmPuP9gIVNR6tBh2N3APrEAAYASAA EgLIbfD_BwE)

[Eg_cruz]

Have you tried Care.com.

[me4vt]

������������

[villageuser]

My heart goes out to you and your family. This is not an easy journey. Regarding your question, a nursing home is quite expensive but I have heard very good things about the Buffalo Crossings Rehab (https://buffalocrossingsrehab.com/). As of a month ago, they had openings if you can pay, otherwise it is about a year and a half wait if you need financial assistance.

[grahambda]

Thank you everyone for your kind words and suggestions

[Arch S]

Thank you everyone for your kind words and suggestions

I highly recommend Compassionate Care Hospice. Very good and provide more hours of support weekly than some other hospice organizations.

You do NOT need a physician's referral to contact any hospice. They will send someone out to your house to do a formal evaluation to see if the patient is qualified.

I also highly recommend keeping your father at home, NOT in a facility. I can recommend a private caregiver. You may call me for her name and contact info. My number is 407-247-3268

[jemiester]

Please get another opinion on his Parkinson’s meds! See a movement specialist, contact the local and National Parkinson’s foundation to seek help on getting better care and his medications adjusted. Just the slightest change in meds to meet his Dopamine needs may be what he needs .Maybe a deep brain stimulator, don’t give up on making sure he is medicated properly!
There is a Parkinson’s support group in the villages, maybe they can help with referrals to a new doctor/Movement Specialist.

[Obrienx4]

Call your dad’s PCP and have them assist you with the next steps in caring for your dad. They should be able to assist you and hopefully they have a social worker that can assist. Also the National Parkinson’s association should have information, best of luck

[Cliff Fr]

Sorry your going thru this and I hope you find a solution

[Holpat39]

Sadly my 75-year-old father is suffering from end-stage Parkinsons, just a few years ago he and my mother would play golf 3-4 times a week, now he can't speak, feed or dress and falls constantly. This is putting a tremendous toll on my mother (as the sole caregiver) and my husband and I can only help periodically due to our jobs which are out of the State. We have tried the home care service providers but none of the care providers they have sent has been experienced enough to cope. None have had any experience dealing with PD patients and are unable to help when he falls - it seems the hourly rates they pay their employees are so low they cannot attract the level of caregiver he needs, we have been paying approx $25.00 per hour but the caregivers rarely receive more than $15.00 and they have to pay for their own transportation to and from their patients).
We have searched for vacancies at full time living facilities, but none so far have available beds and most have a waiting list of more than year, we started our search within 10 miles of TV, so that my mother could visit him on a regular basis, but we have now have had to expand that search to a 50-mile radius, again no vacancies. The two that did have vacancies have terribly reviews and one was being sued by the families of the patients!
We have turned our efforts to try and find and hire directly a caregiver that could live out and provide up to 30 hours a week of caring for him in his home with occasionally spending the night. But despite contacting a few via recruitment agencies none have responded. In addition to the obvious concern over my Fathers situation, we worry constantly about the health and well being of my mother (both emotionally and physically) and she may not be able to copy very much longer.
I would welcome any advice and recommendations to try and find a caregiver for him and any thoughts on long term care facilities that may have a vacancy soon. You can private message me also. Thank you in advance for reading this post.

Check with your primary care doctor. If it is a good one she or he will work with you in finding the right solution. My husband has stage 5 Parkinson's. Our primary doctor recommended Vitas Home Health Care. They came and explained their program with me. Excellent services that I don't need at the present time.

[kimmerlie]

If you call hospice they will help you. Depending on the county they live in: Marion County call Marion County hospice. 352-873-7400 Sumter or Lake County call Cornerstone Hospice. 866-742-6655. Tell them that they need to make a visit to assess ASAP

[virtualcynthia]

This group of Villagers with Parkinson’s may know of local resources

Contact Information
Parkinson Fight Club Inc
1429 Oak Forest Dr
The Villages, FL 32162
Contact: Carol Yaho
Title: Treasurer
Phone: (352) 674-9058
Website:

God’s mercy on your family ������������

[macawlaw]

I am sorry that you are facing this. I had to find memory care for my mother and assisted living and then hospice care for my father. They did not reside in Florida, so I can't make specific recommendations. You have received a number of good ideas.

I would also suggest contacting the local Counsel on Aging. They should have information to share on a wide range of areas in addition to places. For example, meals on wheels might be helpful to your parents, transportation to appointments might be needed, recommendations on legal documents they should have.

You might want to check the rules of the various facilities near you. My dad needed assisted living, but the wait was two years. An opening came up in memory care at the place where I wanted him. By placing him in it for a month, he sprang to the top of the list and had an apartment within six weeks. Something like this could help move your dad up the list.

Good luck finding the help that your parents need.

[joelfmi]

Sadly my 75-year-old father is suffering from end-stage Parkinsons, just a few years ago he and my mother would play golf 3-4 times a week, now he can't speak, feed or dress and falls constantly. This is putting a tremendous toll on my mother (as the sole caregiver) and my husband and I can only help periodically due to our jobs which are out of the State. We have tried the home care service providers but none of the care providers they have sent has been experienced enough to cope. None have had any experience dealing with PD patients and are unable to help when he falls - it seems the hourly rates they pay their employees are so low they cannot attract the level of caregiver he needs, we have been paying approx $25.00 per hour but the caregivers rarely receive more than $15.00 and they have to pay for their own transportation to and from their patients).
We have searched for vacancies at full time living facilities, but none so far have available beds and most have a waiting list of more than year, we started our search within 10 miles of TV, so that my mother could visit him on a regular basis, but we have now have had to expand that search to a 50-mile radius, again no vacancies. The two that did have vacancies have terribly reviews and one was being sued by the families of the patients!
We have turned our efforts to try and find and hire directly a caregiver that could live out and provide up to 30 hours a week of caring for him in his home with occasionally spending the night. But despite contacting a few via recruitment agencies none have responded. In addition to the obvious concern over my Fathers situation, we worry constantly about the health and well being of my mother (both emotionally and physically) and she may not be able to copy very much longer.
I would welcome any advice and recommendations to try and find a caregiver for him and any thoughts on long term care facilities that may have a vacancy soon. You can private message me also. Thank you in advance for reading this post..
them during covidI would recommend you stay far away from them and take care of him in your home. For many bad reasons which I would need 20 pages to tell you which would includied my wife whom was poorly treated and died.

[themartianchick]

I am in a similar situation with my Mom's Parkinson in NY. Her condition is also the reason that I am not currently in Florida. We provide care for Mom in an apartment setting, as the family home was too big for any of us to manage and she did not want to be in a nursing home. We were fortunate enough to get her care arrangements made prior to COVID.

The first caregiver that we hired was someone who had been caring for another family member. We already knew her and felt that she would be a good fit. As Mom began to need more care, we used caredotcom to find two more. We performed a pretty intensive interview, asked for Parkinson's experience, requested references, and used the website to do a background check. I also checked social media to see what kinds of things the applicants posted. Social media also helped me to pinpoint shared acquaintances who were able to vouch for them. Our last hire was my sister-in-law. I remembered that she had done a wonderful job taking care of my mother-in-law. I needed someone that I could trust because she would be covering the bulk of the hours, while I worked a full time job.

We also used a separate service that provided special sessions like skilled nursing, occupational therapy and physical therapy once per week. Each session was a little over an hour. It was nice to know that someone who was a legally-mandated reporter of abuse was checking in on Mom most days! Mom's doctor was able to write a prescription for the services and the OT and PT folks were able to help us to learn how to provide better care and get the proper types of supportive equipment that Mom needed (foam wedges, built up adaptive silverware, etc...)

None of this has been easy, but it has worked for us over the past 4 years. I hope that you are able to find a solution for your Dad.

[Spencer1955]

Sadly my 75-year-old father is suffering from end-stage Parkinsons, just a few years ago he and my mother would play golf 3-4 times a week, now he can't speak, feed or dress and falls constantly. This is putting a tremendous toll on my mother (as the sole caregiver) and my husband and I can only help periodically due to our jobs which are out of the State. We have tried the home care service providers but none of the care providers they have sent has been experienced enough to cope. None have had any experience dealing with PD patients and are unable to help when he falls - it seems the hourly rates they pay their employees are so low they cannot attract the level of caregiver he needs, we have been paying approx $25.00 per hour but the caregivers rarely receive more than $15.00 and they have to pay for their own transportation to and from their patients).
We have searched for vacancies at full time living facilities, but none so far have available beds and most have a waiting list of more than year, we started our search within 10 miles of TV, so that my mother could visit him on a regular basis, but we have now have had to expand that search to a 50-mile radius, again no vacancies. The two that did have vacancies have terribly reviews and one was being sued by the families of the patients!
We have turned our efforts to try and find and hire directly a caregiver that could live out and provide up to 30 hours a week of caring for him in his home with occasionally spending the night. But despite contacting a few via recruitment agencies none have responded. In addition to the obvious concern over my Fathers situation, we worry constantly about the health and well being of my mother (both emotionally and physically) and she may not be able to copy very much longer.
I would welcome any advice and recommendations to try and find a caregiver for him and any thoughts on long term care facilities that may have a vacancy soon. You can private message me also. Thank you in advance for reading this post.


I have a private pay nurse that I have used almost a year. She is experienced, trustworthy, and looking for additional work as I only use her twice a week. I live in the villages. Maybe she can help. Please call me and I can provide information to you. 281-222-0335.

[Boomer]

I hope you can soon find the solution you need for your parents. I understand how sad and difficult this can be.

It looks like you are getting some helpful suggestions here for how to find the needed care in TV. I hope something works out.

But if things are not working out in TV, maybe you could find a place near you in the state where you live.

Moving your parents from TV to be close to your home might not be easy, but maybe it is an option if you have exhausted the possibilities of keeping them in TV. You would know the territory better where you live, so finding the needed care could be easier.

It is possible that if you do end up moving them, once all the work of the move is over and they are settled near you, there would be far less worry for you and your mother because you would be nearby. But I realize they might not want to leave TV. I know how hard this is for all of you.

Boomer

[PugMom]

our family is in a similar situation-i checked out that Right@Home site, it could be a good fit. many good suggestions in this valuable thread

[Garywt]

I would suggest hospice. They do so much more than just caring for patients. They can help in many ways and work with other agencies that you might bring in.

[Mosells]

I too feel your pain, I’ve walked your path. If your father’s doctor will sign off, I too vote for hospice care. I wish good luck.