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.
“planners”. Do the background work yourself and it will pay off in the long run. You must have the tools though - POA is essential.
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.
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!!
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.
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.
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.
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.
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.
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!
* 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
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.
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.
Either of your parents' doctors or clinics might also be able to refer you for social work support.
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.
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.