Who takes care of the caregiver when the caregiver is sick?

HCG, I sympathize with what you write. We can put ourselves on the back burner, like we're not as important as the one we are caring for. And it's not like anyone else is offering to help. So we keep putting our own needs off. In this case you are top priority. You need to schedule your surgery. In your shoes I would call my local department of senior services at your county's human resources division. Depending on your area, it may be called agency on aging or some similar name. You can find some links to the agencies by clicking on the "Caregiver Support" link on the menu at the top of this page. Let them know what your problem is and tell them your father needs some temporary help. I hope that they will have a program available to help or that they will send a social worker out.

I wish your brother would be involved. That would make things so much simpler. But we can't make people do things they don't want to.

This would probably get more response if it was in the Questions section, so I'm asking the moderators to switch it there. Much luck with this. The main thing to remember is you are the top priority here.

Jessie had all good answers for you. Is dad a vet serve during wartime as defined by the VA. If so, call the VA to ask what help they may be able to provide. The Area Agency on Aging is an excellent resource! They will at least know where to start so you can do what you need to do for you.

HCG124, time for Plan B.... your issue is just more than needing to find someone to help your Dad while you recover from knee surgery. From what you wrote, you are becoming totally burnt out from being your Dad's caregiver.

Sounds like Dad's son fell off the edge of the earth once it became known that Dad would start to need help. Or was there other family dynamics involved?

Would your Dad qualify for Medicaid? That's something to think about as your Dad is getting older and you are also getting older... and as we all know we have our own share of age declining issues. Depends on your Dad's health issues, maybe he can get into a continuing care facility, then that way you can jump start your life again after surgery/rehab, maybe even go back to work and continue to add to your own retirement fund.

You're right that no one cares about the caregivers, but one has to realize we made that choice to become one. I hope your Dad has been paying some type of salary to you to be his caregiver, it's not unusual for that to be done.

I totally understand where you are coming from HCG124. I have been taking care of my mother and father for the same amount of time with no help. Finally they agreed to get help. We now have a caregiver 4 days a week for 4 hours each day. Not a lot, but she is so helpful, I can't complain. I finally got this help when I got sick. My white blood count dropped to 2.4 and my red dropped as well to anemic levels. I had no more energy to take care of them, or myself. I'm still battling with my illness and can't seem to find a doctor that can figure out the diagnosis. I have 2 siblings who live in the furthest corners of the US and a niece who is a school teacher who is way to busy but does manage to give 4 hrs Sunday am. It is very expensive to get help and I don't have the energy to search for help that could be affordable for my DAV father and my wheelchair bound mother. If anyone has found the answers to a balance of help and health.

kym62

I would call you local area on aging, they should be able to send a social worker out to talk with you. In our state there are government services for those who are financially eligible to get support. No sure where you live but if you happen to live in Pennsylvania I could guide you with a phone call. You might call an "aging life care professional" in your area and see what they would recommend as well. As an aging life care professional I give people a lot of advice over the phone when people can't afford our services to get them started. Also finding a mental health psycho-therapist to support you in your role would be helpful. I am also a psychotherapist and work with caregivers. You really have a lot on your plate and need help. There is a lot of help out there it is just difficult to navigate. I am saying prayers for you.

I had the same problem that you are in a year ago. Thank goodness I was able to find an Assisted Living Center and my mother had fallen so it was right timing. I was able to complete the paperwork for Medicaid for my mother and still have responsibility of her finances, and medically only not the day to day care any longer. Once she was in Assisted Living I was able to take care of myself first. It has been a year and I'm only just now able to walk again with minimum amount of pain. I know it is hard to say but I have thanked God for the fact that fell and that the doctors agreed that I could not take care of her by myself. That was my saving grace because she did. If she had not I would not be here right now. Is there any way that your father can get into an Assisted Living center? You said you take care of your mother too, that must be very difficult. And you have my humble opinion as the best a caretaker in the world for doing this on your own for so long. It is time to contact DSHS or whatever agency it is in your state to come in and give you help. I hope your parents have all the paperwork in order so that the burden doesn't fall only on you. Their son should be helping as well. I have read on here that some states he would be required to assist when there is no one else. I don't know how that works but I'm sure DSHS or the Department of Aging for the state would be able to help you on this. As far as I'm concerned you are on the top of the pedestal of caregivers. But you need a deserve a break. Some place on this site or a state agency should be able to step in. It may take a little while to get them into that type of situation but would be well worth it. God bless you for everything that you have done, and given us caretakers an example to try and live up to. Please keep us updated on this forum so we can keep you in our prayers.

Wouldn't APS help here? You will be unable to care , he needs care; there is none else, presumably you cannot afford live in care so surely they will step in to protect him or at least guide you. We have social services in the UK - do you have something similar perhaps

Here is a redacted doc part of our file of life in-case caregiver is sick or dead
--
Kathy Nealon Attorney 508 435-6969 regarding management of household and bill payment if I am not available.
--
In an Emergency call 911 Framingham responder has Smart911 data regarding our family.
MedicAlert Services (med information) 800 432 5378 They provided details
on my family and our home. The emergency needs are displayed at
Framingham emergency center if someone calls 911 from our phone

In a non emergency our preferred Hospital: Newton Wellesley Hosp. 617 243 6000
Have EMT/Ambulance take to:
Newton Wellesley Hosp. Newton, MA 617 243 6000

critical EMERGENCY START AT
Local hospital: MetroWest Medical , Framingham Union
Hospital, 508 383 100

Insurance is provided by Medicare & Medx (BXBS) Medex plus Medicaid

Been there ... got rushed to Hosp for heart...
Plan ahead... assume people coming to your aid know nothing about you and yours. I have a set of documents for so they can help the caregiver

PDF File of Life Program - Mass.Gov
www.mass.gov/daplymouth/pdfs/brochures/fileoflife.pdf
Massachusetts
The “File of Life ®”contains the same valuable information as the. “Vial of Life” but it is easier to find by Emergency Medical Responders. Because it is placed on .

I agree about making the phone calls. You need to call your local senior citizen department. Here, it falls under the Disability department. So, you may need to check the yellow pages under your local gov't agency for it. Another option, is through your parent's doctor. He might be able to provide you with resources.

When my mom was first diagnosed with dementia, my dad was told about a federal program at the University that is studying the progressive stages of dementia. My dad contacted them, got a neurologist to take interest over mom. In exchange for their 'studying' mom, they provided a weekly caregiver and some limited supplies for mom. This program has progressed to now including respite care for the caregivers. So, call around. Ask the person if they know of any programs. Get the number and call.

Also through the doctor, mom got a social worker from the clinic. He was also directed to our local govt program for senior citizens. They proved 4 hours of caregiver respite. He was also directed to the Meals-on-Wheels program so that mom can get free lunch meals Monday-Fridays. So call around, and remember to ask if they know of other programs that you might be interested in.

In your "About" section the primary ailment is incontinence. Is that still accurate? If so, does he need someone living there or just checking in and help with specific things? I see you've been taking care of him for 5 years with no time off. I agree that you need to make plans for your surgery and that could be the 1st step in making changes to take better care of yourself.

Honey. I have walked this walk. Walked it so far that I ended up dead on arrival at the hospital in April 2014. So, I understand. Goggle the laws in your state. In GA the law defines the responsibility of adult children of the elderly disabled parent. No. You do not have to do this alone, but don't expect anyone else to show up because that doesn't happen. Someone would have shown up by now. It was my experience that Senior Citizens, Inc and DHS was no help either except to tell me that my hubby was my total responsibility. That was not the truth. Self neglect is a form of abuse. Unfournately, this happens to many many caregivers because we are unable to care for our charges and ourselves. Investigate what your law is for adult children's responsibilities in your state. Then advise your siblings {might I suggest certified mail return receipt requested} of your siblings legal responsibility to their parent. In GA. if a parent is medically or financially needy the adult children, all of them are legally responsible. Dependent upon your situation, find out what is the best solution for you as the primary caregiver and your dad. Doesn't sound like anyone will show up and help you so how about siblings sharing the expense for in home care for your dad. Mortality rates for caregivers are alarming. Our doctor told me that caregivers often die before their charge. No one showed up for me until I was in the hospital with a ventilator down my chest. They collected my husband, looted our home, sold our car, and took all of our money out of the bank accounts and changed hubby's benificary on the life insurance during the 10 days I was in ICU. When I was released from the hospital, I returned to our handicapped apt and called the police, I thought we had been robbed. No one would tell me where my hubby was. I found him by having the police do a well check at his cousin's house. She then called me and asked me where my pension check was, because I was going to support hubby. I asked her where was I supposed to live in a tree, she told me she didn't care. 20 months later, I have my own apt and few things and moving forward. I was homeless for 15 months. Still have no car but I am on a bus line. I am healthly. Even my diabetes is in remission. I had been so weak and sick for a couple of years. I knew I was just going to lie down go to sleep and not wake up. Don't do it. Safeguard your property, your money, have an action plan on where you will live, take care of yourself. Hubby's cousin even made a report to the Division of Adult Protective Services because she did not feel that I had adaquately cared for hubby and that she did not think I had changed his diapers often enough. That went no where, but she got what she wanted, his ssa and pension and the life insurance. I had begged his sons and cousin to please help because I was so sick. I had gotten down to 83 lbs, kidneys failing, ptsd, 3 different types of anemia, diabetes and nerve damage could barely walk, and had had a pin stroke. Do contact your dr. If I had to do it over again. I would first safeguard the finances, lock down my property, have irrevocable benefaries on pensions and life insurance, and take charge over for a friendly visit and go get the medical, physical and mental help I required. Your life is worth it. The reality to these illness are they expensive. Unless you are extremely well off, there will be nothing left for the healthy spouse to survive on. If you are a child, even less and somebody always says the caregiver is stealing the charges property money or mistreating them. Really. And how would they know that. In the end, your life is worth more than the degradation a caregiver has to live through. Did you know that homeless shelters are full of people with dementia, Parkenson's, stroke survivers, people in walkers, amputees, old people? Guess that little news fact doesn't get out because before APS or DFACS or the nursing homes will take any action they happily turn a blind eye and let the sick and old go to the shelter, but will threaten family members that if you don't take care of them, you will go to jail. That is not exactly true in GA. I am not saying put your sick loved ones in the street. What I am saying is stand up and let the public know exactly what is happening to our elderly and the caregivers. It is horrible. I have found that families pushing all this on one person is the norm. The diease and illness is horrible enough, no one can care for their loved one alone nor should they have to. With help, we can all survive this a little better. And, check out the people that come into to take care of your loved ones. I could not believe what they charge to care for the sick. I will keep you in my prayers. Oh yeah, I have never seen my husband again. Cousin has conveiced him that I ran off with another man and stole his money and that she rescued him. Really, they both showed up at the hospital when I was in a coma in ICU to have a POA on my pension check authorized. Dr. told me that after I regained consiousness. Anyway, get your ducks in a row, Rescue and fight for your life and your charges. Please everyone speak out and make a difference.

I also can relate to who takes care of the caregiver, I wish you the best and i really hope you can find someone to take over while you do have your surgery, I myself am a caregiver for 10 years I took care of my mom who moved in with us she was Schizophrenia and refused meds and also had severe COPD in which she passed in 2013, but my husband also I had to take care of at the same time, he had a stroke in 2009 and I had back surgery in 2005 with limited mobility and i am always at lost since y mom passed i am continuing with my husband and his effects after the stroke, but stays in bed a lot, like 99% of the time i have had pain in my stomach for the last 2 years in which they have tried different meds including a test for ulcers and after 2 years i finally got a diagnose, But no body helped me with my mom nor my husband and having my health issues also, I feel there is no one to help me, My husband won't let anyone in and constantly wants something from me weather it's food, a soda etc.And he comes from a family of 13 and not 1 has offered to help. It has been a long road between taking care of my mom and him and putting my needs a side and now I told my husband who can do more but refuses too, and will actually starve himself if i don't get him what he needs and i sit a say who the heck takes care of me NOBODY, so I have to trust that things don't go wrong while i am gone for a appointment it's very stressful, So I know it has to be stressful and hard on you to be the sole caregiver, So i do relate. Just finding this out for myself that if i don't take care of me no one else will, So i say do what you got to do for your own health i put mine off for way to long and now I just got to do me before i end up in the hospital with something way more then the illness i have now, then i am right now. So please take care of you because you are no good to anyone if your not good to yourself, It took me all this time to finally say who cares about me, So i have too... I really hope everything turns out for the best but please take care of you

I WAS the care giver to my husband for the past 18 years.
I was notified by my physician that I had a recent Heart Attack with in the past 3 months but have been in & out of the hospital 4 times in that space of time.
My husband has injured me badly. My PCP has now gotten home health care in to see me & change dressings 3X a till no longer needed.
He has solvent dementia, a brain tumor & bipolar disease. He hit me with divorce papers the day I had the heart attack, knocked me around & I CALLED THE POLICE, who were useless to me.
The first night I was in the hospital, he broke into the guesthouse where I live now & stole all my money & jewelry & anything else he wanted. Again, the police were useless.
I am lost, alone, penny less,with out a car now & very scarred. I have used all the numbers I had to call before he cut my phone line & he also closed out our joint banking accounts, leaving me with out a cent.
I can hardly walk anymore & if there is a way to get help someone please tell me.

Moondance, I don't understand why the police were "useless". If your husband physically assaulted you ("knocked you around"), that could be a felonious assault. He's also committed a felony theft. And breaking and entering is also a felony. What was the response of the police? I really don't understand why the police were "useless." Could you elaborate?

Cutting a phone line is a crime against the provider, whether it's AT&T or Comcast. Call them. It might also fall under the jurisdiction of the FTC or FCC since he cut communication lines.

When someone calmly stated that my lines would be disconnected if I didn't consider their service, I called Comcast and they took that threat quite seriously.

If he closed a joint bank account without your signature, then he must have committed fraud if he forged your signature. What did the bank say when you contacted them?

As to help, the first thing I would do is request a PPO against him. Call your local county courthouse and ask how to get this accomplished. In our area, there's a PPO office with volunteer attorneys who help complete the Petition. Then you would have to take it to a judge for execution. If you call ahead the PPO staff might be able to arrange for someone to go with you to the judge's courtroom.

The sheriff then serves the PPO.

Also, contact a local woman's shelter, the local county or state bar association, and ask if there are any attorneys who handle pro bono divorce work. You'll definitely need representation, and definitely would want to consider a countersuit as well as injunctive relief to prevent him from absconding with any more money.

what would happen if YOU passed away before your father or you were in an accident, who is set up to help IF something would happen to you? I would suggest contacting your local office of aging (as said in other comments) and you are not responsible for paying for someone to come in to help with your dad, this would be based on your fathers income so Medicaid might pay for some care while you re-cooperate. And not everyone is cut out for caregiving but you stepped up to the plate and have done your best. Please find some help so that you can help yourself. Good luck

I, myself, went to the ER when I had to live out of state with my Mother. Went to her local ER, got the issue addressed and back to caregiving.

I am sometimes tempted to think there will be a special place in hell for evil relatives.

Join the club of those of us who will hopefully get our reward in heaven. I am sick right now with a sore throat, but I plug along because I know my husband needs me and my marriage contract states, "in sickness and in health". I would do it anyway because he took care of me when I had a clinical depression - cooking from scratch and walking our dog. So, if you need sympathy go to your priest or minister or buy some respite care. Otherwise most of us just suffer through it knowing there is nothing worse than losing one's mind...(in my opinion).

I am caring for my Mother at a nursing home, and my father just got out of the hospital, and spent five weeks in rehab to gain strength. My mother has Alzheimers. She is 86, my Dad is 91.
I now have been diagnosed with shingles. All I do is tend to them. I haven't much time for anything else. My husband helps me out a lot, thank God! I guess my sister does what she can, she's just not reliable enough for me to feel I have time off. I run my household, and theirs, even though they don't live there. We have an elder care attorney, but had to pay $7000 for that, in order to tend to things. We took a huge chance with this decision.
Back to topic, I am run down. In every way. Do what you can to take care of yourself. Its very hard.
VA was no help either, since my parents had some savings. Go figure!

care of the caregiver when the caregiver is sick is different from getting care for someone else. Particularly true when you are alone and have no family within hundreds of miles.

I have used ElderCare Resource Services is a Geriatric Nurse/Social Worker partnership that assists families in investigating, assessing, and recommending the medical and non-medical resources required for the care of Seniors. for advice and planning

Caregivers must take care of themselves

Same situation, same knee operation needed, maybe a hand operation too as I still feel pain from an injury from 5 months ago.... some heart or stress issues that I would get checked as well as a lot of rest needed...we must all be exhaust being caregivers. I slept a lot my first week of respite. I hired a full time live in caregiver and I am hoping she can take care of me too during recovery, turning the family house into a hospital :-). So a suggestion would be to find a way to hire a live in caregiver, perhaps seeking from different independent sources as websites (e.g. greataupair) and word of mouth from people who have found a good caregiver, not too expensive and very caring, patient, perhaps also a hard working housekeeper. That's how I found my mother's caregiver, she worked up the road with a family we knew and was highly recommended when the lady she was caring for passed away to Parkinson's. Making extra cash to pay her wage by renting a portion of the house on Airbnb.com, which the caregiver takes care of. Our situation is not all that rosy though, as I am still continuously filling in many gaps,i.e. when she goes away to her mother who just passed away and for many other tasks as well as that extra care and management only family can provide, the unfortunately generous one who does care. Therefore I still haven't found a window of opportunity that allows me to get operated, even with my sister starting to forcefully participate to the burden by interrupting her life shot amounts of time, after 3 years I've been covering 90% of responsibilities.
Perhaps siblings might start to take some greater amounts of responsibility if we email them these issues, questions, answers and comments or by just starting to take care of ourselves for the time we need, leaving them to manage the hot potato for once. I haven't got the answer yet and am curious about the comments from others. Thank to Everyone
V

Dad's going to have to become a little more self-reliant while you mend yourself, so get ready for a heart-to-heart talk. Since money talks, outside help is going to be very limited. Few people are going to help you before and after surgery; and even fewer for your obstinate Dad. Both of you are going to meet each other halfway and work out some sort of compromise.

Sorry my love, but in this country you only get as much help -- and justice -- as you can afford.

Don't forget, if you hire a caregiver check to see if they have workman's comp in case he/she gets hurt on the job.

If the caregiver doesn't have workman's comp, then you need to check with your homeowner's insurance carrier about getting a workman's comp rider.

I'm sorry to hear your going though hard times and having shingles, It is so stressful when you don't have many options to have someone in to take care of you or help you out, Sending you healing thoughts and strength