Caregiver.com

For About and By Caregivers
 


 
Subscribe to our bi-monthly publication Today's Caregiver magazine


  + Larger Font | - Smaller Font
 



CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 01/22/13

Right now, I am caregiving for my dad 24 hours a day, 7 days a week. He has dementia and just recently broke three ribs.  He was at a rehab facility, but they were not giving the care that he needed and it ended up that I was actually doing the caregiving instead of them.   After two weeks, my family decided that it was best to bring him home. Why pay them if I was doing all the work?
 
So, I am up literally every two hours during the night to catheterize him, change brief or do whatever is needed. During the day, I dispense his meds, catheterize as needed, change brief, do bed baths, help with dressing and oral care, continue therapy with him when therapist isnít here, and oh so very much more. I have had to put my "life" on hold to be able to care for my father. So, due to this, I have no income for myself. This is making us literally live paycheck to paycheck,  which is very slim. Is there some way I could get some pay for what I do?
 
 
Betty in Smyrna,  TN

Reply to Letter  |  View Comments  |  Past Carenotes | 

Name
Location
   
Add Your Comments  

 
YOU  MUST ENTER THE NUMBERS 4567 IN THIS BOX BEFORE YOU SUBMIT THE FORM.  IF YOU DO NOT IT WILL PROMPT YOU TO START OVER.
  

View Comments

Name: Sharon Kelderhouse
Location: Illinois
Date: 01/28/2013
Time: 05:32 PM

Comments

I've been taking 24/7 care of my husband who had a stroke in June 2010 and would be very interested to find out if I could get paid but don't know how to find out about this.


Name: Jackie
Location: Nj
Date: 01/28/2013
Time: 03:50 PM

Comments

I took care of my grandpa, grandma, my mom, and now my dad part time, it does take its toll. I also work full time. I have come to the conclusion, I am a to always be a caregiver.....


Name:
Location:
Date: 01/28/2013
Time: 12:57 PM

Comments

Yes please check on va funds may take awhile and then call your social worker in town and find out what he can have, if he has ssi they may be able to let you know where to turn also, I have hospice to help me with my hubby who a termial ill heart patience and medicare handels all the bills form everyone dont have to pay a cent, also some churhes have a plan to help out the community by oddering free help with there people in town, I recieve food from one church that now has poeple come over to relief me anytime I want some time to myself. Also help with grocery shopping and laundry or anything with no commitment to their church, also ask around for help with maybe a sitter from the senior center who has a big heart also check with your hospital about having a senior come for the day like they have them at the hospital to help out there, they helped me when he was in the hospital for a fews days they let me go home and shower and do what I needed to do mostly rest check with ssi about surving benefits for you while he's in need of help. I hope this work out I know how hard it is, willow care will lite a candel that the gov will see the need to put monthly in our pockets for all the work we do for our loves ones dying, geez people get food stamps etc and really dont need them sorry later willow


Name: Mary
Location: Tampa
Date: 01/28/2013
Time: 10:14 AM

Comments

If your loved one is a veteran, please contact your closest VA hospital or clinic. There is a benefit from the Veteran's Benefit Administration called Aide and Attendance. It takes some effort to complete all the steps, but it is something to investigate.


Name: Linda Salisbury
Location: Franklin, MA
Date: 01/28/2013
Time: 06:50 AM

Comments

Hi Betty, Many states have what is called an Adult Family Care program, (sometimes it's referred to as Adult foster Care) which is paid by Medicaid. A caregiver is paid a daily stipend. I hope TN has one. Who is his medical insurer?


Name: Alison
Location: Manchester, NH
Date: 01/28/2013
Time: 06:38 AM

Comments

In the State of NH, there is a special Medicaid Program called CFI, Choices for Independence. This is a program that, once found eligible, the care recipient is connected with a case manager and supports/services provided in the home. Once the individual is found eligible for this Medicaid, the primary caregiver can be paid a stipend through the "Choices for Independence Adult Family Care Program". Not sure if TN has anything like this, but it is worth checking out through your local Dept. of Health & Human Servivces office. Good luck!


Name: Dana Mathis
Location: Murfreesboro, TN
Date: 01/28/2013
Time: 06:23 AM

Comments

As a scheduling Director for Caregvier Services of TN, formerly Elderly Services I have lots of clients who have state funded care. You can call 1-866-836-6678, which is the single point of entry into the CHOICES program or GNRC program. All non-medical care can be provided. GNRC is Greater Nashville Regional Council Area Aging on aging and Disability. The CHOICES Program is through Americhoice or Amerigroup. There are many services under these programs....Personal Care Attendant, Personal Care, In-home Respite, Homemaking, etc. Please call ASAP to see if they can help you. When you call the number you will pretty much give them some personal info so they know what program is best. It is possible there is a waiting list. I really hope this helps.


Name: Rae
Location: Tampa Bay Fl
Date: 01/27/2013
Time: 10:35 PM

Comments

My understanding is one can call medicare and receive a stipen payment of $2000.00 a month IF you father does not have more than a few thousand in the bank of his own. I am in same situation, but my mom does have more money and I could pay myself but do not feel right about it. Athough, I am the only adult child that takes care of her ever. My husband and I are on a fixed income and if it were the other way around, I would be entitled to this funding. If not medicare, call social security. I do believe it is medicare. You are saving them a huge amount of money by taking care of him at home. If you need help, ask his doctor to order home care for baths, and if he is close to his death by 6 months you are entitled to Hospice Care at either a facility or your home. They are angels and there is no cost. However the patient must be close to end of life. My mom requires 24hr care also but know you are doing God's work for your dad and you will receive the Graces He Promises. Angel work and I will be tired but proud forever knowing I did my best for my Mom. Blessing for con't strength and faith. Rae


Name: Donna Boughter
Location: New Castle, PA
Date: 01/27/2013
Time: 06:25 PM

Comments

PA has some Waiver programs through the Welfare Dept. Medical Assistance. There is a program that the relatives can get paid for some hours. Certainly not the 24/7 that you put in but it helps. Call your Area Office on Aging and they will know the programs in your state. Some agencies are helpful and some not. I just retired from the Beaver County Office on Aging and I miss helping.


Name: Stacy
Location: Maplewood MN
Date: 01/27/2013
Time: 03:22 PM

Comments

To Betty. I taking care my parents ages 80 and 85. My parent gets medical assistance and food stamp, I contact the financial worker who handle their cases and got referred to the elderly waiver program. They paid personal care attendance hours and some home making hours for family. Home making is cleaning and cooking time. If you don't ask they don't tell for home making. My father got big surgery and got put in rehab. they don't take good care and took him home.


Name: Sheila
Location: Pa.
Date: 01/27/2013
Time: 02:33 PM

Comments

I am in the same situation as Betty only I am taking care of my husband. I have been doing this for 5 years and it is taking a toll on me. The paper work in horrendous and with cooking 3 meals a day, washing clothes driving to Doctor`s appts.,showering him, dressing him. Money has run out. seems so crazy not to pay caregiver who has saved his life numerous times there is no compensation for the BEST care he receives bar none. Children live much too far and are holding their own taking care of their lives.


Name: Sharon
Location: Maryland
Date: 01/27/2013
Time: 02:31 PM

Comments

Is your father a veteran. Check with VA - Aide in attendance. He may have earned compesation that will help pay for his needs if you meet the mininum requirements. It juss takes a long time for approval.


Name:
Location:
Date: 01/27/2013
Time: 01:34 PM

Comments

I wish I could offer you some help. I went thru this with my sweet Mother who died in 2005. I lived in Houston, she lived in Trinity, Alabama. Thankfully, as a senior agent at Continental Airlnes I was able to secure a 10-hour shift with 3 days off. My last day of work, I would sprint to catch the last plane to Huntsville, AL and was able to spend 2 1/2 days every week helping with her care for 4 years...While I can't help you, I want you to know that every second you contribute is to be cherished, no matter what. Take the advice of the others to contact your governmental agencies on aging and care. Surely they can help you somehow. If I lived near you, I would offer my assistance because I know first hand how hard it is to cope. You need a break...I regret not living near you so I could lend a hand. I'll add you to my prayer list. Just keep seeking help from all the agencies and ask friends to help also. Go out on the limb, seek assistance from a church....the more information you put out seeking help, the better you're chances of receiving help. Friends and family don't know what to do unless you reach out to them. God Bless You!


Name: Frank Melton
Location: Bowling Green, KY
Date: 01/27/2013
Time: 12:04 PM

Comments

The state has an Elder Abuse Hotline you can call when he is not getting the proper care. The Area Agency on Ageing will know the number.


Name: Angil Tarach-Ritchey RN GCM
Location: Michigan
Date: 01/27/2013
Time: 08:00 AM

Comments

Programs vary from State to State but if your Dad is on Medicaid you may be able to get paid through the State for at least a few hours a week. If he is a Veteran you should look into getting Respite through the VA so you can get a break and look into the Aid and Attendance pension benefit. If your Dad qualifies for that he could receive around $1200 a month and could then pay you for care. Like someone else mentioned, check with your local Area Agency on Aging or whatever it's called in your state. Sometimes you can find the information your looking for on your State website and Department of Aging. Does your Dad have assets to sell, like a home or property? 24 hour care is a lot of work and if you're up every 2 hours through the night you need time off for rest and should not struggle financially. You might want to also check with your local Catholic and Jewish Social Services. Sometimes they have programs including volunteers that can sit with your Dad so you can rest or take care of your own needs and life. If your Dad is a Veteran I would check into those programs first since they are likely to provide more than any other programs. Blessings on you, your Dad and getting some financial and respite support.


Name: Eva June Roberts-Vazquez
Location: Long Island NY
Date: 01/27/2013
Time: 07:17 AM

Comments

Continued, Independent Living Centers (ILC's)are consumer run organizations which assist people with disabilities in advocating for the ability to control one's life, near Smyrna Tennessee is: Center for Independent Living cil-mt.org (615) 292-5803 Submitted In Memory of my Mother, June E. Roberts MSW, Advocate Eva in NY 955 Woodland St, Nashville, TN


Name:
Location:
Date: 01/27/2013
Time: 07:10 AM

Comments

If he has savings or income to pay you then, he could pay you a reasonable amount to care for him, and it would not count as a gift. If his income and resources are low, then he might qualify for care through Medicaid. You would need to arrange to be the responsible party for that, of course since he is not "self-directing". There are also ways for Medicaid to pay for family and friends through consumer directed plans, but I think that certain family members cant be paid for this. I'm not sure if daughters are allowed. But through that plan, you and your dad would be responsible for the hiring, firing, training and supervision, and there is a lot more flexibility as to work the consumer directed personal assistant aides can do for example depending on the local regulations, personal care assistants hired thorugh agencies can't put pills in the mouth, can't do other types of care, it's rather regulated. With the consumer directed, there's more flexibility. There may be an Independent Living Center, which is NOT a residential program, but an advocacy organization which assists with the


Name: Donna
Location: Huntsville, AL
Date: 01/27/2013
Time: 07:05 AM

Comments

I agree,too, with the comments below, especially in regards to him being a veteran. In my dad's town, the VA service officer, which is who would handle this, is located in the VA clinic, if you have one around. He has a caregiver agreement contract form for the income you'd be getting and would be the POA for getting the Aid and Attendance program. Also, if he's over 65 he would be automatically considered disabled (or at least 70, in which case his application is automatically routed to a special pension center for expediting). Your dad might have to sign but if he's a veteran and like mine he'll sign anything the VA tells him to. But, like was said, if he can't handle it himself, they will appoint someone to do so and if you're the caregiver, it can't be you. But apparently it really takes something for that to have to be the case because it wasn't done with my dad. But it does take a little while but not years like you may be told; only months, at least in our case about 4 but you do need to make sure the VA officer does fill out the paperwork correctly, which is why you may be told to not go through them. The VA does have attorneys certified to do this who are not allowed to charge for just filling out the paperwork; again, if you make sure it's filled out correctly, which I'd like to think they can do but they will want to and try to bill you though for consultation fees if you try to check on them, so be careful there, unless you qualify for the over 60 free; I didn't. But with the VA service officer if you just make sure that the caregiver agreement contract amount you're to get paid agrees with the amount actually put on the application, you should be all right; that's what happened in our situation; apparently there was some miscommunication between the service officer and the caregiver; don't let them get you tangled up in what your expenses are or were; that has nothing to do with what you are to be getting paid; that's to be based on either the laws in your state regarding family members giving care of the market rate for caregivers in your area; that's all that matters, not how much you're saving by living there, or whatever your prior living arrangments were. That's what happened in our situation; the caregiver agreement form was filled out properly but then the application was only filled out for him to be reimbursed what he had been paying for rent and utilities prior, which of course he was no longer having to pay anyway so do think about that as well. Of course for any of this I'm sure you know you will need to get physician documentation but if he's already been in rehab that shouldn't be a problem


Name: Caregiver
Location: Wyoming
Date: 01/27/2013
Time: 06:49 AM

Comments

If your father is a Veteran, there is a benefit available through the VA called "Aid and Assistance."


Name: teresa
Location: pittsburgh, pa
Date: 01/27/2013
Time: 06:29 AM

Comments

For veterans: i really like this website from the veterans administration for caregivers: http://www.caregiver.va.gov/ toll free number is 1-855-260-3274 maybe they can give more specific answers on the easiest way to apply for care/ asst for veterans. ask about aide and attendant care benefit and also program helping veterans to stay at home. i hear so many stories of length of time to apply, so maybe this number can help to give specifics on how to apply as efficiently as possible. there is also a zip code search to locate your local va services. i am not sure if this website and number helps, i have not called myself, but it looks like a good resource to me.


Name: Lisa Bell
Location: Folsom, PA
Date: 01/24/2013
Time: 06:58 PM

Comments

The comments below are truly your most helpful. Just make sure you are obtaining the most appropriate information according to your state of residence. You are so busy but take the time to do things right (document your time in a journal) so there are no regrets in years to come. Involve your family in even the smallest responsibilities. xx


Name:
Location:
Date: 01/22/2013
Time: 08:00 PM

Comments

It is possible if the person who needs care has some income for a family member to be be paid a reasonable amount to provide care. Keep track, talk to a lawyer, often there is free legal help for people over 60. If you do it the right way, then if the funds run out, and he becomes eligible for Medicaid this is not a gift, as you are earning it. Also through Medicaid there are consumer directed plans. Medicaid pays, but the person does the hiring firing and training. If an individual is not able to be self directing a family member or someone would have to serve in that capacity. The Dept of Social Services would know about the CDPAP or consumer directed personal assistance program. If the person you are caring for is a vet with a disability, might be able to get help through Aid and Attendance program. Consider that if you can work and do, perhaps the money could help pay for a pt caregiver, so that you could stay connected to your supports and the rest of your life.


Name: zuzu
Location: Greensboro NC
Date: 01/22/2013
Time: 06:42 PM

Comments

If your dad is a veteran of the service he's entitled to Aide and Attendance which could be used to pay for your caregiving, and that benefit is not looked at by Medicaid, so is not countable income. Check with your Department of Social Services - Adult Care Division like was suggested to see if he qualifies for any assistance programs, or if you qualify to be paid by any program. If you have his POA as someone suggested you can write up a contract with him to be paid by him for your services, but check with a lawyer to be sure this is done correctly as it can affect his Medicaid benefits later if not cone right. Medicare won't pay for long term care. I understand what Sandi was saying about Ombudsmen and teaching the facility people how to do the therapy, but after two years of my mother in law in one of the better SNF in our town, it was more tiring to keep watch over the people who worked there than it was to watch her and we spent as much time at the SNF as we had caring for her in her home. They NEVER got stuff right, and no amount of teaching, making pictures on the wall, griping, complaining, meetings ever helped. The turnover rate is too high and most don't really care enough to learn. You've made a wonderful choice to try caring for him at home and seeking help at your Social Services office, Area Agency on Aging, VA Services, local Community Resources for Independence, free legal aide offices, Department of Health and Human Services for senior resources can all be potential places for help. Ask about Community Block Grant programs, In Home Service Programs, In Home Demonstration Programs, CAP Programs. That should give you a good start. Let your family, friends, church members, social groups know you need help too, and specifically what they can do - Caring Bridge has a great website for building a networking site to let friends help. You are not alone, and you will survive.


Name: Donna
Location: Huntsville, AL
Date: 01/22/2013
Time: 05:56 PM

Comments

Is your dad a veteran? If so, check with the VA


Name: tj
Location: wv
Date: 01/22/2013
Time: 10:48 AM

Comments

Check with your local senior center or area agency on aging for programs where you can get paid to be his caregiver.


Name: Sandi
Location: north dakota
Date: 01/22/2013
Time: 06:49 AM

Comments

Betty---contact the county social worker right away. You may be eligible for PCA or Personal Care Attendant funding through the county funds. She/he may also be able to connect you with some respite care options as well. Is Medicare/caid involved? Social Worker may be able to assist with necessary paperwork. If no ideas, call the social worker at the local hospital and see about options; call your dads physician. Question for you for the rehab: WHY were you giving care? Why did YOU not teach the nurses his routine, allow them to do their work and NOT do it?? Each state has an OMBUDSMAN to talk with. Your family, and you, may have been expecting too much. Rehab is to see what he is capable of and then allowing him to do it. Do you?? Good luck!


Name: Kristina
Location: Connecticut
Date: 01/22/2013
Time: 06:28 AM

Comments

Hi, Get an elder lawyer if you don't have one already. They can help you set up a legal document stating that you are getting x amount of income for so many hours a day to care for your father. You should document your daily caregiving tasks. Here in Connecticut, family members can get no more than $15/hour. This document will enable your father to pay you income from whatever means he has, pension, SS etc... Keeping everything documented will provide some protection/proof of what his assets have been used for should he exhaust his personal income and ever need state assistance. It almost has to be treated as a business, a health contract between you and your Dad. I would also suggest looking to your Area Agency on Aging to see what resources are available for help with your father. You can't do this yourself. Take care and good Luck to you.


 







 

Join our Group or become
 a
Fan below

Caregiver on Facebook

   Follow us on Twitter

You TubeFearless Caregiver Channel