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I need some advice. My mom has Parkinson’s and my dad was unexpectedly diagnosed with liver failure due to untreated hepatitis C. Dad has been taking care of mom up until this point. She is stage 3, doesn’t drive, and has worsening cognitive issues. I don’t know yet what his life expectancy is, but I’m guessing it’s limited. I can see needing outside help with cleaning, cooking, etc being the first thing we need to address. Eventually one or both may need assisted living.


I am an only child in my 30s and have four young kids. One is profoundly disabled and requires full care. How in the world do I add in being a caregiver to my parents? How do I manage taking them to dozens of appointments with their doctors, lab tests, and medical procedures each year? I’m at a total loss.

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Make sure you have/get financial and medical POA if you don’t already have it. Get added to their bank accounts as a signer if they will let you. Get a true picture of their finances including investments, ready cash, estimated value of residence, life insurance, etc. Find out what home care agencies are available and cost. Consider hiring a private caregiver if necessary. If they can afford AL get the ball rolling on that. Look around to see what is available. If you will need financial assistance, check with state aging resources for information on how to qualify for Medicaid. You have too much responsibility to try to take this on as a caregiver. You need a plan and a team using what you have. Don’t waste your time trying to hire someone else to make the plan for you. Ask questions, gather information, be open to advice, but you are the best person to sort this out. I agree with others that I have never met anyone who didn’t waste time and money trying to use paid resource
“planners”. Do the background work yourself and it will pay off in the long run. You must have the tools though - POA is essential.
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When my parents were in their early 80s, they moved to be closer to me so that I could assist them in their old age. They recently passed away at the ages of 95 and 97. I was the only child in close proximity to them to assist with shopping, the doctors, accountant, lawyer, and other service providers. I agree with everything all of the others mentioned. The time involved can be intense, especially when you are trying to take care of your own family. I, too, have a special needs child who needs a great deal of care. The stress of trying to do it all can be overwhelming.

One important aspect of their care is the ability to pay their bills. Getting your name added to all of their financial accounts is essential to do while your parents are still able to make decisions. Otherwise...you just never know what will happen. My dad had always been in charge of the finances and was slow to give up control or share even where their savings were. When dad had a heart attack, my mother had to sign checks. At that point, she could barely remember how to spell her name. Fortunately, the banks honored the checks and bills were paid. Dad survived and then told me where to find their money and got me added as a signer to their bank accounts.

All the best to you and your family.
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If your parent(s) are in the hospital, ask to meet with the case manager or social worker to discuss assistance. You can meet in person or talk over the phone. Let him/her know about your concerns. He/She can help arrange all the assistive services your parents qualify for if they stay in their home... or help with placing them into residential care.
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MaryPL: Your parents require managed care facility living NOW. You do not possess the medical training and knowledge required to care for them, even if you had nothing else to do; your own family is your priority.
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I'm sorry about your circumstances. Truly you came to the right place where you can get much needed advice. First off,I put myself second in being a caregiver.
I drained my heart and soul doing everything and lost myself. I got overwhelmed with financial matters and family that just talked the talk. I soon realized that I couldn't be or do everything! It's time to care for you and your family first. Don't get lost in your effort to be your parents lifeline, just know you are looking for help and that's all you can do for now. Just ease into the situation and don't blame yourself about it. You can find outside help to come in but it's not a given. It will progress into assisted living and memory care, very expensive. Please tell me you are POA and everything is in order? Oh, I hate being so responsible for everything! I thought I was POA but didn't help with selling the townhouse.
Just saying that you need to think this through and the for coming care they need is going to stress the stress you have. I want to say, hiring outside help, doesn't help when family members need to be placed for their benefit and yours. How do I say that, there's ten commandments and honor thy father and mother is number 4. You can't honor them being ill and not focused. You really have to put yourself first in order to help them. Please don't take this on alone! Love!!
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As many others have said, you can't and shouldn't add caregiving to your already full plate. My plate is probably not as full as yours, but still very full.

I have many priorities, a bed-bound mother with dementia, an MIL that lives in a different country suffering from heart issues, teenage kids, one with health issues and a full-time job with travel. I have tried to manage it all myself and prioritized everything other than my physical and mental health.

I was just released from hospital having had multiple blood transfusions because I didn't deal with something that was very easy to resolve, if only I had the time. I am also facing surgery to resolve issues that would have taken an hour or less to deal with (if only I had the time).

My point is you and your own family must be priority. You can't continue to add more to your already full plate without impacting something. In all likelihood, it would be your own health.

Good luck, I know how difficult is but set your boundaries, find a solution for your parents and ensure you prioritize yourself and your family.
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Since it’s your parents just hire it out. When the money runs out put them on Medicaid. Just be happy it is not your spouse where it gets a lot more complicated.
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Does your mother have Medicare Advantage? If your mother has Medicare Advantage, they will pay for someone to come in and cook, clean, run errands, and take her to her doctors’ appointments. They will even pay for someone to parent-sit for your mother. Medicare Advantage will pay for about 35 hours of service per week and this help will alleviate some of this workload for you. I have Medicare Advantage and I love, love, love it. I get $70 ever 3 months to spend on OTC products, plus all the above perks that I just mentioned and many, many more perks that’s too many to mention here. My Medicare Advantage also pays for Lyft or Uber transportation to my doctors’ appointments. Also, for people with diabetes, heart conditions, and kidney disease, the Medicare Advantage that I have gives $75 every 3 months to buy fruits and vegetables, along with the $70 to buy OTC products which adds up $145 every 3 months. Some people on this forum complain that Medicare Advantage is no good, but I have no complaint whatsoever about the Medicare Advantage PPO that I have.
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Pjdela Aug 2023
I am glad your private plan is working so well for you. These plans vary by state and are private plans, not Medigap plans. I would be very careful about doing that where I live.
A friend who has Medicare Advantage had to get a referral from her PCP to see a specialist about her lower back. When she finally got her visit, she mentioned that she also had pain in another part of her back. The specialist told her he couldn't talk to her about that because she had only been referred for the lower back and that she would need to go back to her PCP and get another referral to see him about her upper back! She also had to have a referral to see any specialist from her PCP and they had to be in the network.
I prefer to have the option to see whoever I want without needing a referral. I am not sure I want to sever ties with Medicare for good. It is my understanding that when you choose Medicare Advantage plans which are actually privately offered plans you cannot go back to traditional Medicare.
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“private geriatric case managers”

It all sounds good in theory…in the brochure…

In reality, I don’t know anyone who uses that, and I don’t know anyone where that worked. The reality is, that some things just can’t be shoved onto someone else (non-family, even if you pay them). Unless you let the State/APS take over everything, there are many problems/decisions that’ll probably land on you OP, no matter how hard you try to get the load off your back.

Anyway, I hope your parents can hire as much help as possible, so you have as little to do as possible.
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ElizabethAR37 Aug 2023
You're absolutely right--there's no "magic" solution. Still, personally, I would seriously consider hiring a geriatric case manager/social worker at least for an initial needs assessment and perhaps guidance on eventually preparing for Medicaid if it appears that we may outlive our resources. (At 93 and 86, we hope that won't happen! We have our legal documents in place, including Wills, POAs, POLSTs, EOL wishes and prepaid cremation instructions.)
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A lot will depend on the parents' financial situation, but there are usually private geriatric case managers, in addition to social workers available through the local Area Council on Aging. (These are usually county agencies, and their services may be income restricted although they may provide general guidance at no charge.) Most hospitals also have social workers on staff, and the parents' physician(s) may be able to make a referral to resources. Private case managers can be pricey but may be well worth the cost if parents can afford it. Check websites, state licensure and reviews.
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As an immediate need, you can check into their insurance to see if it will cover any visiting nurses.

But, going forward look for some in home care programs...

We have one here that is called IRIS. Your parents can select whatever caregivers THEY choose(that includes family)!!! IRIS will provide the funds necessary for their care and also for anything they may need in the home that is not covered by their insurance. For example a lift chair. They also help pay for outside activities if needed or wanted.

There are programs in every state.
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Call "A Place for Mom" and see if they can be placed together? You have too much on your plate..........let the professionals care for your parents so that you can be a great and compassionate visitor.
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First, I am sorry for all that is on your plate.
Second, there are liver transplants and drug treatment for Hep C. A cousin was cured of his Hep C with medication, so your father can get info about that as he is of sound mind still. Sadly, my Dad died at age 71 from complications from Hep C in 1997 before there was much known about it or any treatments.
I don' t know how old your parents are but if you are in your mid thirties they could still be relatively young.
Third- I agree with getting the help of a social worker. Where I live you can contact what is called the Area Council on Aging. Your locale should have something similar. They can connect you with agencies to contact for info, assistance, etc. I also had a geriatric care manager come do an assessment of my Mom at her house who could gauge my Mom's abilities and whether her living situation was suitable for her level of ability and how it could be made so. They also had info on facilities, caregiving agencies, financial assistance etc... They charged by the hour for their time. Not cheap but helped me navigate the situation.
Fourth- The ACA mentioned above could tell you how to contact a certified elder-law attorney or you can search one out. Get someone experienced in just that if possible and with a good reputation. You will eventually need durable power of attorney, medical power of attorney or your parents will need medical directives. Make sure all their finances and wills are in order. So you will need to have a conversation with your folks about those if they do not already have those things in place.
It may be best or it may not for both your folks to go to a continuing care community. I would think it would depend on your Dad's age and prognosis. If not good, then a continuing care community would probably be best. Also, there are small group homes. Again, your social worker or geriatric care manager can help provide info. My elder law attorney was also a help as he was a legal guardian for some of his clients and he was familiar with some of the local facilities. He gave me a list and also told me where his clients were getting good care.
If not a continuing care community then placing your Mom may be necessary to help relieve your Dad of the burden of her care while he tends to his own situation and to insure her proper care.
If your parents are capable, they will be able to make these contacts for themselves. If not, I am afraid the burden will fall to you. Do you have friends who can help out with your kids? Maybe some of them could accompany your folks to some doctor visits. I know it is a lot. Time to surround yourself and them with a support team. Many people will help if you can give them specifics such as "Yes, I need someone to stay with my kids on Tuesday when I take Mom to her doctor appointment". "We could use a meal on Thursday after we get back from Dad's treatment" Otherwise, people don't know what you need. Even if they are placed in a facility, you will still need to address some of these things.
We are here to support you if you need us. All the best to you and yours- prayers as well.
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ElizabethAR37 Aug 2023
Continuing care communities (CCCs) are a great invention for those who can afford them. Unfortunately, many "Silent Generation" and older Boomers who retired from long careers in modestly compensated employment (such as nonprofits) cannot. Even with some LTC insurance, we are left out of most CCCs.

Overall, we likely do not have enough resources to afford $100K+/year for long term care at home or in a facility, especially if needed for more than 2-3 years, but we have too much to qualify for assistance. (As a group, we'd better not spend much in retirement or--worse yet--live too long!) CCCs usually have a hefty entrance fee, as we discovered when checking out these facilities some years back, as well as a monthly fee and possibly additional fees for any extra services. At one we would have chosen, we were told that we would need "a minimum of $1 million in convertible assets" to qualify. Bye-bye CCCs!
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From your profile, I determined that you are in a University town (OU), so that's good. At the present time, you are overwhelmed and need two kinds of help: 1) a social worker who is skilled and knowledgeable of the agencies in Norman who provide a) the best home health care available or b) the most highly rated skilled facilities which might be where your parents need to reside in order to receive all the needed services that are certainly in their future. You are going to be helping your parents by choosing free, sliding fee scale, or private pay services to evaluated and deliver services to them both. I viewed a Facebook page for "Aging Services of Cleveland County" with a 405-321-3200. Begin to view yourself as the "Captain" of the team that delivers direct care. You might need a counselor for yourself to help support you with the guilt you may feel. The other kind of help you can benefit from is the Services of a good Elder Care Attorney, who guides you through "Power of Attorney" for both medical and financial matters for both your parents. Please do this very soon while your Dad has all his mental faculties. MargieRKB has some great suggestions in her post. The physicians of your parents may know of excellent resources for the care, treatment, and transport of your parents. Hospice Services might also be appropriate. You will survive this as being able to be a loving daughter, while 'directing the care' of you parents, but not as direct care giver. Your first obligation is to your own children.
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(1) You need to take a breath and know that it is one step at a time and that the needs ARE NOT SOMETHING YOU NEED TO DO:
* Yes as other(s) said: take care of you / your immediate family FIRST.
* Write and date all notes and documentation (when w your parents, write down what today is like ... so you have a record).

(2) You need someone to manage all this
* contact county senior services - elder care
* social worker: some manage care.
* Find ind care givers (or like me) someone who manages care
* Ask their medical providers for referrals and letters indicating the level of care they need (you will need this authorization).

(3) Get all legal authority as you can NOW.
* You need to be able to make decisions for their care now and moving into the future.

(4) They likely need to be in a care facility.
* Call some and ask for an appt to speak with the administrator (they may divert you to the in-take coordinator). Get a tour, talk to as many people as you can at a facility.

(5) Ask for support any and everywhere you can, including updating your posts here (it is a huge resource of support and information)
- Next Door
- Churches (bulletin board)
- Facebook (?)
- Friends, neighbors (for referrals)

(6) If you can afford it, get a therapist / a family therapist to help you organize and figure out the 1,2,3 needs and also how to manage your emotions. This is a huge challenge / need for you to take on / go through. You need professional support.

Gena / Touch Matters
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You have gotten so many wonderfully supportive answers.

Now comes the hard part: you KNOW what you need to do. YOUR family comes first. Trying to 'do' for your folks will take you down, and fast.

If this were my parents, I would seek out a living arrnangement where they can be together, yet with outside support as needed. An Assisted Living apartment situation comes to mind. One that offers many levels of care, as your folks grow worse.

My DH had HepC and developed liver cancer. Miracualously, he was able to receive a liver transplant and then was ccured with Harvoni. IDK how far along your dad is, but has Harvoni been mentioned? It's truly a miracle drug. Eradicated the HCV and gave DH a second chance at life.

Your mom--so sad, you can really live a long life with Parkinson's, but sounds like mom is pretty deep into it.

You can only really be their advocate, not their primary healthcare provider.

As for the many medical visits, etc., only you can decide how involved you can be in those. Perhaps you can piggyback those so that maybe ONE day is jam packed with Dr visits, and not spread them out over many days?

I worked in Elder Care and I was the person who took clients to the Drs. I'd take copious notes and then report to the family. That may have seemed weird, but it worked well.

I didn't see mention of mom & dad's financial status. IF they can afford help--please take advantage of that. Get them used to outside help and not relying on you for everything. There are wonderful CG's out there, you may have to try on a few before you find one or two that are a good fit.

Please don't try to do this on your own. My DH is currently caring for his mom at home and it has taken him to his knees with depression and exhaustion. And he has NOTHING else tugging at him--he's retired and I do all the household stuff.

CG is brutal--and CG for elders is it's own kind of awful.

Good Luck on this path.
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Your first priority is your children and your self. This is not selfish, just realistic. I suggest you imagine what they would do if they were alone, without an adult child. They would find a solution. Tell them you are willing to coordinate their care but cannot personally provide daily care. This is not a selfish position, rather a loving and realistic offer to help.
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While you father is able, have all the legal work (will, POA, HCPOA,) done. Make plans with them. Tell them that you have your plate full and cannot contribute to their care. We use the term in our house "no spoons in the drawer" Look up spoon theory. You will need plans for both of them and plans for each of them depending on which parent passes first and their care level. Have them involved in drawing up these care plans. Will some help with cleaning in home work for now? Maybe meals on wheels? Home health care? Do you need round the clock supervision (Facility placement? or live in care taker?) Some "facilities" have independent living cottages up through skilled nursing care. This might be an ideal arrangement depending on their finances. Residents pay for the level of care that they need. The sale of their house and assets would cover some of it.

Do spend as much time with them as you can to share life. My mother lived to be 95, and I consider her last years bonus years. I would go through boxes of old photos with her asking about the people in the pictures and the memories that went with it. I asked her about her past and her memories. Since she was not a story teller, I had to use a lot of "prompts". When she died, I felt so glad I had done that. My father died at 70 after a period of rapid deterioration. I had small kids and was not able to spend that kind of time with him as they lived several hours from me.

My mother's wonderful parting gift to my sister and I was a notebook with all of her legal papers, her financial assets, her funeral plans...just everything. We didn't have to do much besides write the obit (and Chad at Snyder funeral homes was great with that) pick out flowers and decide what to have her dressed in. Seriously, it was pretty stress free even though done during COVID lockdowns. The worst part was her beloved pastor had been promoted and could not do her service. We had some weird substitute instead. He got my name wrong during the service and my sister spoke up right in the service and corrected him. I also wrote the eulogy because I had a bad feeling about his ability. We have implemented this notebook idea for my MIL. This has proven very valuable as my MIL now has dementia and today we are making care plans for her.

We got social services at the hospital involved. I have visited care facilities and asked friends about care facilities they have used. The assisted living community we plan to use for my MIL also has been good with guiding us. Many counties also have councils on ageing. Hospice might have services you can use. The pastor of your church might have ideas. I'm sure he or she has had some old congregants who used these services. Visiting Angels services might also help.
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Start with an In-home hospice provider for your dad. Preferably a non-profit one! They will provide a social worker and get approval from his doctor. The social worker will help you with everything going forward. I did this for my dad.
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You don’t. You can’t possibly take this on. The first step is to cut yourself some slack and give yourself permission to NOT take this on. It’s not like you have the resources to do it and are just refusing to do it. Then you need to find a social worker who will help you navigate getting them the care they need. Either at home or in a facility.
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You asked how to get a social worker. Have you thought about hospice care? If not, please check into it. My husband was in in-home hospice. The provider sent social workers, nurses, and caretakers. They didn't come every day, but were a huge help, and so nice to share their experiences and knowledge. Good luck!
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Sounds like Placement speak to a social worker soon .
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Get options for facility placement for them both. You can begin this with their PCP and, a referral to a geriatric case manager/ Social Worker who can help you navigate options for their care placement in a facility; you may also want to speak with an Elder Law Attorney for directions for your own well being as well as understanding the many dimensions of elder care. Be sure that you get POA documents and other legal decision making etc documents in place. Be clear with the parents and PCP that you cannot provide care in your home nor in theirs and,that although no one ever likes it, facility placement is a must.
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The answer is you are not going to be able to care for them. They have conditions that are only going to worsen. They need to move into a facility now....one that has different stages of care.
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It does sound likie your parents need a higher level of placement than Assisted Living. Your father is the more cognitively able of your parents, so help him choose a care facility that can manage both of their needs.
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You don't. You can't. Something's gotta give. If your state has a Senior help agency, call and ask for suggestions. IF YOU CAN AFFORD IT, call an outfit like Home Instead (I used them and they were excellent, not cheap but affordable) and it will give you a break. The money is the issue. Do your parents have resources to pay for care? Do you have a POA? (crucial). Do your parents have caring neighbors who can help out? (Don't discount any potential source of help!)
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Mary, contact your local Area Agency on Aging. They can set up an appointment with a social worker. They can also set your parents up with Case Management services.

Either of your parents' doctors or clinics might also be able to refer you for social work support.
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Skip the outside help with household chores and go directly to the assisted living option.

You won’t have the time or energy to manage all their illnesses plus the people you hire to come to their house. At assisted living you immediately get help with everything. It takes much of it off your shoulders.

You must make it clear to your parents that it’s the only way.
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You don't manage it because it's not possible with your own family and their needs. I think you already know this though.

Considering that both of them need a lot of care, I don't think that even moving a live-in caregiver with them will be enough. Taking on both of their needs is too much for one person, even a professional.

Now is the time for serious plans to be made. Like your parents being moved into AL and an private aide hired to handle doctor's appoitments and lab tests.
AL is probably the best bet for them.
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You don’t. Why would you even think you have the capacity to take care of two more people?
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